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Monograph Cancer Control Interventions in Selected Jurisdictions: Design, Governance, and Implementation Agence d évaluation des technologies et des modes d intervention en santé

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MONOGRAPH Cancer Control Interventions in Selected Jurisdictions: Design, Governance, and Implementation Monograph prepared for AETMIS by Lorraine Caron, Mirella De Civita and Susan Law with the collaboration of Isabelle Brault May 2008

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The content of this monograph is available in PDF format on the Agency s Web site. Page layout Jocelyne Guillot Coordination Lise-Ann Davignon Information specialist Mathieu Plamondon Documentation Micheline Paquin Denis Santerre For further information about this publication or any other AETMIS activity, please contact: Agence d évaluation des technologies et des modes d intervention en santé 2021, Union Avenue, Suite Montréal (Québec) H3A 2S9 Telephone: Fax: E.mail: How to cite this document: Lorraine Caron, Mirella De Civita and Susan Law with the collaboration of Isabelle Brault. Cancer Control Interventions in Selected Jurisdictions: Design, Governance, and Implementation, monograph. (AETMIS 07-08a). Montréal: AETMIS, p. Legal deposit Bibliothèque et Archives nationales du Québec, 2008 Library and Archives Canada, 2008 ISBN (PDF) ISBN (Print) Gouvernement du Québec, This report may be reproduced in whole or in part provided that the source is cited. 3

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NOTE TO READERS This monograph is an organized collection of information on cancer control strategies, plans and programs in Canada, England, France, New Zealand as well as in five Canadian provinces, namely Alberta, British Columbia, Nova Scotia, Ontario and Québec. It refers to the jurisdictions past and ongoing initiatives in cancer control as of the end of This monograph was used as a reference source for the production of a final AETMIS report, which provides a targeted comparative analysis of cancer control strategies and programs in selected jurisdictions. The final AETMIS report, published in October 2007, is available in French on the AETMIS website. 4

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ACKNOWLEDGEMENTS This monograph was prepared at the request of the Agence d évaluation des technologies et des modes d intervention en santé (AETMIS) by Lorraine Caron, PhD (Biomedical Sciences – Bioethics), Mirella De Civita, PhD (Psychology) and Susan Law, MHSc (Health Administration), with the collaboration of Isabelle Brault, N, PhD (c) (Public Health). Lorraine Caron was responsible for designing, developing and managing the second phase of this project ( ) and for drafting and finalizing this monograph. She also played a substantial role in preparing a preliminary report submitted to the Ministerial Cancer Task Force (MCTF) in Mirella De Civita played a substantial role in drafting this monograph and in the data design, gathering and analysis for the monograph. Susan Law played a substantial role in designing, developing and managing the first phase of the project ( ), including conducting interviews, preparing the preliminary report submitted to the MCTF, and critically reading the monograph. Isabelle Brault played a substantial role in designing, developing and coordinating the initial phase of the project ( ), including conducting interviews and preparing the preliminary report submitted to the MCTF. AETMIS wishes to call attention to the contribution by Vicki Foerster, MD, MSc, who conducted most of the interviews, and by Megan Edmiston, BA, who transcribed and coded them. AETMIS cordially thanks the following individuals: Véronique Déry, MD, MSc, for her guidance, suggestions and encouragement throughout the research and the drafting of this monograph. Jean-Marie R. Lance, MSc, and Gilles Pineau, MD, for their support and feedback while this monograph was being drafted. We also thank all of the interviewees, everyone who provided information for this project, and especially the following people, who played a role in validating the descriptions of the strategies and programs pertaining to their jurisdiction that are profiled in this monograph: Anthony Fields, MD, Vice President, Medical Affairs and Community Oncology, Alberta Cancer Board. Antoine Loutfi, MD, Director, and Brigitte Laflamme, Assistant Director, Direction de la lutte contre le cancer, Ministère de la Santé et des Services sociaux, Québec. i

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Mandy Jacklin, Deputy Head, Cancer Team, Department of Health, England. Andrew Padmos, MD, Chief Executive Officer, Royal College of Physicians and Surgeons of Canada, and former Commissioner ( ) of Cancer Care Nova Scotia. Maurice Soustiel, MD, Director of Cooperation with Developing Countries, Institut national du cancer, France. Terry Sullivan, PhD, President and Chief Executive Officer, and Helen Angus, Vice President, Planning and Strategic Implementation, Cancer Care Ontario. Simon Sutcliffe, MD, President, British Columbia Cancer Agency. AETMIS finally thanks the members of the Centre de coordination de la lutte contre le cancer au Québec ( ), Ministère de la Santé et des Services sociaux, and Reiner Banken, MD, MSc, for their contribution in guiding the first phase of this project ( ) and the members of the Direction de la lutte contre le cancer, Ministère de la Santé et des Services sociaux, for their contribution during the second phase ( ). ii

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ABBREVIATIONS AND ACRONYMS ACB ACCAP ACCCC ARH BC BCCA CCLCQ CCM CCNS CCO CCPC CEPO CPACC CQCO CSC CSCC CSQI CSSS CT DCP DCPC DGS DGSP DGSSMU DH DHA DHB DHOS DHPP DLCC DREES FCCHU FNCLCC Alberta Cancer Board Alberta cancer control action plan Alberta Coordinating Council for Cancer Control Agence régionale d hospitalisation (France) British Columbia British Columbia Cancer Agency Centre de coordination de la lutte contre le cancer au Québec Chronic care model Cancer Care Nova Scotia Cancer Care Ontario Comprehensive cancer prevention and control Comité de l évolution de la pratique en oncologie (Québec) Canadian Partnership Against Cancer Corporation Cancer Quality Council of Ontario Cancer Services Collaborative (England) Canadian strategy for cancer control Cancer system quality index (Ontario) Centre de santé et de services sociaux (Québec) Cancer Taskforce (Angleterre) District cancer program (Nova Scotia) Division of Cancer Prevention and Control (USA) Direction générale de la santé (France) Direction générale de la santé publique, MSSS (Québec) Direction générale des services de santé et de la médecine universitaire, MSSS (Québec) Department of Health (England, Nova Scotia) District Health Authority (Nova Scotia) District Health Board (New Zealand) Direction de l hospitalisation et de l organisation des soins (France) Department of Health Promotion and Prevention (Nova Scotia) Direction de la lutte contre le cancer (Québec) Direction de la recherche, des études, de l évaluation et des statistiques, ministère de la Santé (France) Fédération de cancérologie des centres hospitaliers universitaires Fédération nationale des centres de lutte contre le cancer iii

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GCLC HAS HCC ICCC ICP INCa INPES INSERM INSPQ INVS IOG IOM LHIN MH MHLTC MHP MSSS NCAT NCCP NCD NCIC NGO NHS NICE NSBSP NZ NZCCAP OPIS PCT PHAC PHSA PQLC QCCC RLS RUIS SGAS Groupe conseil de lutte contre le cancer (Québec) Haute autorité de santé (France) Healthcare Commission (England) Innovative care for chronic conditions Integrated cancer program (Ontario) Institut national du cancer (France) Institut national de prévention et d éducation à la santé (France) Institut national de la santé et de la recherche médicale (France) Institut national de santé publique (Québec) Institut national de veille sanitaire (France) Improving outcomes guidance (NICE, England) Institute of Medicine (USA) Local Health Integration Network (Ontario) Ministry of Health Ministry of Health and Long Term Care (Ontario) Ministry of Health Promotion (Ontario) Ministère de la Santé et des Services sociaux (Québec) National Cancer Action Team (England) National cancer control program (WHO) National Cancer Director (England) National Cancer Institute of Canada Non governmental organization National Health and Social Services (England) National Institute for Health and Clinical Excellence (England) Nova Scotia breast screening program New Zealand New Zealand cancer control action plan Oncology patient information system (Nova Scotia) Primary Care Trust (England) Public Health Agency of Canada Provincial Health Services Authority (British Columbia) Programme québécois de lutte contre le cancer Quality in the continuum of cancer care (USA) Réseau local de services de santé et de services sociaux (Québec) Réseau universitaire intégré de santé (Québec) Système de gestion de l accès aux services (Québec) iv

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SHA SPO SROS UNESCO USA WHO Strategic Health Authority (England) Structure-process-outcome Schéma régional d organisation sanitaire (France) United Nations Educational Scientific and Cultural Organization United States of America World Health Organization v

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TABLE OF CONTENTS ACKNOWLEDGEMENTS…i ABBREVIATIONS AND ACRONYMS…iii 1. INTRODUCTION Scope of the cancer problem Policy context Purpose and potential impact Summary of content APPROACH AND METHODS Research question and guiding objectives Underlying conceptual approach Scope and level of inquiry Selection of jurisdictions Data sources Document and literature review Interviews with key informants Validation by program directors INTEGRATED FRAMEWORK Cancer and the scope of cancer control Review of relevant frameworks Resulting integrated framework HISTORY OF POLICY DEVELOPMENT Highlights of the jurisdictions Key factors defining a favourable context for change DESIGN Highlights of the jurisdictions Commonalities and differences in design The goals and priorities of cancer control Values, guiding principles and key concepts The spectrum of cancer services Organizational architecture Service quality facilitators Targets and indicators of outcome GOVERNANCE AND MANAGEMENT Introduction Highlights of governance features Key actors and levels of involvement vi

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6.2.2 Main governing bodies Characterizing cancer control governance MAIN ACCOMPLISHMENTS Progress in organizational architecture reform Service quality facilitators: Initiatives up and running Distinctive features IMPACT Highlights of the jurisdictions Canadian strategy for cancer control New Zealand cancer control strategy and action plan France nation-wide cancer mobilization plan Ontario cancer plan England NHS cancer plan Cancer Care Nova Scotia program British Columbia Cancer Agency program Alberta Cancer Board program CANCER CONTROL IN QUÉBEC History of policy/program development Design Spectrum of cancer services Organizational architecture Service quality facilitators Targets and indicators of outcome Governance Central governing organization Other key actors within the health system Main accomplishments Summary of progress Progress in organizational architecture reform Service quality facilitators: Initiatives up and running Distinctive feature Impact Appendices Appendix 2A Interview guide Appendix 3A Frameworks in the literature Appendix 4A List of main policy documents by jurisdictions Appendix 4B Barriers and facilitators of change according to key informants vii

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Appendix 5A Stated goals to intended actions by jurisdictions Appendix 5B Values and guiding principles by jurisdictions Appendix 5C Selected targets and indicators of outcome by jurisdictions Appendix 6A Key actors in cancer control governance by jurisdictions Appendix 6B Organizational charts of health ministries by jurisdictions Appendix 6C Organizational charts of appointed governing bodies by jurisdictions Appendix 7A Main service quality facilitators by jurisdictions Appendix 8A Progress in achieving measurable indicators of outcome by jurisdictions Appendix 9A List of main policy documents: Québec Appendix 9B Stated goals to intended actions: Québec Appendix 9C Values and guiding principles: Québec Appendix 9D Selected targets and indicators of outcome: Québec Appendix 9E Key actors in cancer control governance: Québec Appendix 9F Evolution of the central governing structure for cancer control in Québec. 335 Appendix 9G Organizational chart of the Québec Ministry of Health and Social Services with a focus on cancer control Figures and tables Table 1 Sampling framework for key informants… 8 Table 2 Progression from cancer treatment, to cancer care, and cancer control Table 3 Frameworks relevant for cancer planning and evaluation Figure 1 An integrated framework for analysis of cancer control interventions Table 4 Stated goals and priorities for cancer control intervention by jurisdictions Table 5 Values and principles guiding cancer control intervention by jurisdictions Figure 2 Key concepts definitions Figure 3 The cancer care continuum Table 6 Service quality facilitators: Main action areas Table 7 Functions of provincial/national cancer control governing bodies Table 8 Investments in cancer control by jurisdictions Figure 4 Structure and accountability of a typical cancer services network in England Figure 5 Cancer control governance in Québec Figure 6 Ministerial cancer working group proposal for a unified governance Figure 7 Cancer control governance in Québec since viii

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1. INTRODUCTION 1.1 SCOPE OF THE CANCER PROBLEM Cancer is the first cause of death in Québec, 1 and the leading cause of premature death in Canada. 2 In 2006, Statistics Canada estimated that 153,100 new cases of cancer would be diagnosed in Canada (of which 38,300 would be in Québec), leading to 70,400 deaths (of which 19,100 will be in Québec). 3 Moreover, the number of people living with or having been diagnosed with cancer is increasing at roughly twice the rate of new cases of cancer. 4 Not only does cancer pose a significantly high disease burden on individuals, it is associated with substantial economic and social consequences for their families and society. If these current trends continue, it is estimated that, over the next 30 years, the direct health care costs of cancer will be more than $176 billion in Canada only POLICY CONTEXT In April 2003, the newly elected Minister of Health and Social Services (Dr. Philippe Couillard) established cancer as one of his top priorities. A Groupe de travail ministériel en cancer (Ministerial Cancer Working Group) was established to make recommendations on how to improve the management and impact of the Programme québecois de lutte contre le cancer (the 1998 Québec Cancer Control Program or PQLC). 6 AETMIS was asked to provide the Ministerial Cancer Working Group with a brief synthesis of its ongoing study of cancer control strategies/programs and governance models in jurisdictions outside Québec. Such study was commissioned in early 2003 by the Ministry of Health and Social Services as part of a wider project examining evidence-based approaches to cancer services organization. In response to the Ministerial Cancer Working Group s request, preliminary unpublished material was presented to the Group in October The Ministerial Cancer Working Group report was released in the spring of The Minister of Health and Social Services then presented it s three-year working plan, based on the priorities established in the Ministerial Cancer Working Group Report, at the First Annual Forum of the Coalition Priorité Cancer au Québec in April The Minister also announced the creation of a Direction de la lutte contre le cancer (Division for 1 In Québec, deaths from cancers surpassed death from cardiovascular diseases in See Institut National de Santé Publique du Québec. Portrait de santé du Québec et de ses régions Deuxième rapport national sur l état de santé de la population du Québec. Les analyses, p Canadian Cancer Society/National Cancer Institute of Canada: Canadian Cancer Statistics 2006, Toronto, Canada April 2006, p Canadian Cancer Statistics 2006, p Health Canada. Population and Public Health Branch. Centre for Chronic Disease Prevention and Control. Progress report on cancer control in Canada, 2004, p Canadian Strategy for Cancer Control Business Plan for the CSCC, April 2006, p Ministère de la Santé et des Services Sociaux. Programme québécois de lutte contre le cancer : Pour lutter efficacement contre le cancer, formons équipe. Québec, Ministère de la santé et des services sociaux, 1998, 186 p. 7 Ministère de la santé et des services sociaux. Groupe de travail ministériel en cancer (Luc Deschênes, Chair), Unifier notre action contre le cancer. Rapport de la démarche ministérielle visant l’amélioration de la gestion et de l’impact du programme québécois de lutte contre le cancer, 2004, 53 p. 8 See Dr. Philippe Couillard speech, Forum de la Coalition Priorité Cancer au Québec, April 23, Available at: aa185256e7f ?opendocument Accessed October 20,

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Cancer Control) to ensure strong leadership in the implementation of the Minister s working plan. In January 2005, a Cancer Control Director was appointed to oversee cancer control efforts in Québec. In November 2006, highlights of this monograph was presented to the Québec Cancer Control Director who requested that Québec cancer control intervention be examined using a similar framework. 1.3 PURPOSE AND POTENTIAL IMPACT This author monograph builds upon and completes the preliminary data submitted to the Ministerial Cancer Working Group in It provides a detailed portrait of cancer control interventions (i.e. policies, programs, as well as strategies, and actions plans) 9 in four countries (Canada, England, France, New Zealand) and five Canadian provinces (Alberta, British Columbia, Nova Scotia, Ontario and Québec), with a particular focus on their design, governance, and implementation. This monograph is to serve as the reference document for the production of the final AETMIS report that will provide a comparative overview of cancer control strategies and programs in selected jurisdictions, including Québec. The benefits gained from learning about cancer control initiatives in different jurisdictions are increasingly acknowledged, as evidenced from the ongoing work conducted by the World Health Organization as well as the work presented at the annual International Cancer Control Congress, and the annual Forum of the Coalition Priorité Cancer among others. The body of knowledge presented in this monograph regarding the planning and implementation of cancer control interventions may prove to be useful in informing cancer control policy initiatives in Québec and elsewhere. Such a descriptive analysis could also be used as a starting point for research on exemplar attributes of cancer control interventions. In addition, the information herein can also contribute to a broader understanding of the structural and contextual factors influencing the planning and implemention strategies adopted by various jurisdictions. 1.4 SUMMARY OF CONTENT Chapter 2 describes our Approach and Methods for the study of cancer control interventions in the selected jurisdictions. Chapter 3 presents an Integrated framework that was created to guide the selection of elements to be analyzed. Chapter 4 provides an overview of the History of Policy Development, examining jurisdictions approach toward the development of provincial or national cancer control programs, strategies and/or action plans. Chapter 5 on Design describes a number of essential features pertaining to the conceptual aspects of cancer control interventions – namely, goals and priorities, underlying values, guiding 9 We use the expression cancer control intervention as a catch all term to include cancer control policy, strategy, action plan and program. It also better captures the differences among jurisdictions regarding the object of our inquiry. In some jurisdictions, cancer control initiatives are stemming from an ongoing cancer control program with or without additional strategies or actions plans. In others, the cancer control intervention is mainly coming from a unique cancer control plan or strategy. However, the object of our analysis must be distinguished from the cancer control system as defined by the National Cancer Institute of Canada, which is a broader concept, comprising 4 inter-related components: fundamental research, intervention research, service delivery programs and monitoring and surveillance. See Advisory Committee on Cancer Control, National Cancer Institute of Canada. Canadian Medical Association Journal, 1994;151(8):

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principles and organizing concepts, the spectrum of cancer control services, approaches to health services organization (organizational architecture), the strategies and mechanisms for sustaining and improving service quality (service quality facilitators), as well as targets/indicators chosen to monitor progress and/or assess outcome. Chapter 6 on Governance provides a general overview of the key actors involved in cancer program/action plan implementation, with a focus on levels of implication (national, regional, local) and relationships with the health ministry/department. In addition, the chapter describes a number of features of the main organizations appointed to oversee policy/program implementation, regarding their legal status, vision and missions, internal structure, functions, resources available for implementation and accountability. Chapter 7 on Main Accomplishments first describes jurisdictions progress regarding their planned reform in service organization and then moves into presenting the service quality facilitator initiatives that are currently in place. This chapter ends by presenting one distinctive feature for each jurisdiction. Chapter 8 on Impact summarises jurisdictions achievements toward reaching their program/cancer plans goals and targets, based on available litterature of program and/or action plan assessments. Finally, chapter 9 presents an overview of Cancer Control in Québec, providing within a single chapter, information similar to what was gathered for the other eight jurisdictions. 3

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2. APPROACH AND METHODS The request for examining cancer control interventions 10 in other jurisdictions was prompted by a policy review in Québec. The Ministry of Health and Social Services expressed interest in having information about specific features characterizing cancer control programs and strategies/action plans in other countries as well as in other Canadian provinces. 2.1 RESEARCH QUESTION AND GUIDING OBJECTIVES Based on multiple discussions with policy-makers to identify information needs and the policy context, the following main researchable question was formulated to guide our study of cancer control interventions: What can Québec learn from other jurisdictions regarding cancer control priorities, governance models, effective service organization, strategies for ensuring evidence-based clinical practice, and successful ways to implement change? To address this question, we established the following objectives: 1. Describe cancer control policies, programs, strategies, and action plans (interventions), including intended reform in the organization of cancer service delivery; 2. Describe the governance of cancer control interventions, including the status, structure, accountability, functions, and partnerships of the main governing organizations; 3. Highlight main accomplishments with regard to intervention implementation, including key informants experience of reform, and the synthesis of available data from published audit reports and/or evaluations; 4. Compare jurisdictions along the aforementioned (1 to 3) components and draw lessons for cancer control planning and reform implementation. 2.2 UNDERLYING CONCEPTUAL APPROACH This study is best described as a descriptive inquiry, aiming to highlight cross-jurisdiction differences and similarities in the development of cancer control interventions, while acknowledging the role of the socio-political context in shaping the way in which complex 10 Contandriopoulos et al define an intervention as an organized system of actions (in a specific context and at a given time) seeking to produce services in order to correct a problematic situation (p. 522). See Contandriopoulos AP, Champagne F, Denis JL, Avarques MC. L évaluation dans le domaine de la santé : concepts et méthodes. Revue en épidémiologie et en santé publique, 2000;48: Similarly, Pawson et al use the word intervention to refer to policy, program, service delivery, or treatment. See Pawson R, Greenhalgh T, Harvey G, Walshe K. Realist review a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy 10(suppl 1) July 2005: S1: While a policy can be broadly defined as a statement of preferred outcomes or direction of change in relation to a perceived issue or problem, a program refers to the specific means adopted to give effect to a policy. However, a distinction cannot always be rigorously drawn. See Cabinet Office. Government s Center for Management and Policy Studies. Beyond the Horizon: Workbook — A Framework for Policy Comparison, p. 9. 4

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interventions are developed and delivered. Our approach seeks to describe and classify by juxtaposing 11 jurisdictions along selected features, thereby generating insights for policy analysis. 2.3 SCOPE AND LEVEL OF INQUIRY Considered at a strategic management/organizational level, 12 cancer control interventions are complex and involve a substantial health system response at multiple levels. Thus within the resources available for this study, it was necessary to balance comprehensiveness with selectivity in reviewing their critical features. The selection of the features to be described and analyzed was determined by considering the perspective of decision-makers and by using an integrated framework developed after a review of existing models for cancer control planning (see Chapter 3). The object of inquiry comprises many levels of analysis, including: (1) programs, strategies and action plans; (2) organizations appointed to govern those programs or action plans; and (3) partnerships between the government, the appointed organizations, as well as relevant organizations within the health care system, including non-governmental organizations. For the most part, the study focuses on policy level (macro level) aspects that corresponded to the needs of the policy-makers within the Québec Ministry of Health and Social Services. This means that we did not examine how the cancer control interventions are translated at the level of institutional functioning (meso level), nor how they influence the relationship between patients and health care professionals (micro level). However, information gathered on some selected elements (e.g., governance, organization of service delivery, factors influencing change) provide insights into how certain components of cancer control interventions are being implemented at the level of institutions, communities, and local regions. More specifically, the dimensions examined include the following: History and context of cancer control policy development, as well as major general health system reforms; Design features of cancer control interventions, including goals, values and principles, spectrum of services, models of service delivery, strategies and mechanisms for quality assurance/improvement and for health care system sustainability, as well as set targets and indicators; 11 The different stages wherein each jurisdiction rested along the cancer control planning and implementation continuum rendered the task of making a true comparison inappropriate (See Mark et al, 2000, p. 201). We thus use the term juxtaposition to refer to a type of broad policy comparison. See Cabinet Office. Government s Center for Management and Policy Studies. Beyond the Horizon: Workbook — A Framework for Policy Comparison. Available at: 12 While our inquiry comprises multiple levels and dimensions, it cannot be truly defined as a system analysis since it does not examine all of the relevant organizations, programs, and resources that comprise each jurisdiction s cancer control service delivery system, nor does it examine the dynamic relationships between those components. Hence we characterize this study as a strategic management/organizational perspective, which would touch upon the network/partnership level and the system level, according to the nomenclature used by Wanke M, Juzwishin D, Thornley R, Chan L. An exploratory review of evaluations of health technology assessment agencies. HTA initiative #16, Alberta Heritage Foundation for Medical Research, 2006, p

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Governance of cancer control interventions, including the role of key players (government and health care system), collaborative partnerships, as well as the structures and functions of governing organizations and their relationship with government; Resources dedicated to implement the strategies, actions plans or to operate the programs; Jurisdictions priorities for action, main accomplishments, highlights of some distinctive features, and available reports on impact; and Key informants views on strengths and weaknesses, priorities for reform, facilitators and barriers to reform, and lessons learned from planning and implementation. In summary, this study seeks to provide a systematic understanding of cancer control interventions in terms of how those interventions came onto being (development history) what they intend to achieve (design), how they are managed (governance), what they achieved and how (implementation), and what contextual factors may be shaping and influencing them (see chapter 3 for more details on the integrated framework used, and the description of the main analytical categories). 2.4 SELECTION OF JURISDICTIONS Jurisdictions were selected in consultation with Health Ministry policy-makers. 13 The criteria for selection included: (1) relevance to Québec context; (2) comprehensive cancer control interventions (continuum of services) supported by a publicly funded health care system; (3) jurisdictions (countries and Canadian provinces) perceived to be forerunners in cancer control; (4) available documentation for analysis; (5) varying models of governance, (6) varying experiences in cancer control reform; (7) potential promising practices; and (8) experience with implementing change. Eight jurisdictions were initially selected for inclusion in this study, comprising four countries: Canada, England, France, New Zealand, and four Canadian provincesnamely, Alberta, British Columbia, Nova Scotia and Ontario. 14 Québec was then added at the request of the newly appointed Québec Cancer Control Director. 2.5 DATA SOURCES A document and literature review as well as interviews with selected program personnel, stakeholders, and other informants served as the primary sources of information for describing the cancer control interventions. We did not conduct site visits to observe the actual circumstances in which the various programs operated Document and literature review This sudy examined two primary data sources of literature: grey literature as that available from websites of government, academic and stakeholder organizations – and published literature. 13 Policy-makers were members of the Centre de coordination de lutte contre le cancer, a ministerial cancer organization that was abolished in 2004 and replaced with the Direction de lutte contre le cancer. 14 Although we acknowledge that other jurisdictions such as Australia would have offered interesting examples, our selection was limited by available time and resources. It was felt that the eight selected jurisdictions would offer the needed insights and information regarding planning and implementation of cancer control programs. 6

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Documents regarding cancer control programs, strategies and action plans, progress reports, financial reports, and evaluation reports of the jurisdictions, as well as the business plans, annual reports, newsletters, research and technical reports of governing organizations were drawn from the websites of governments (health ministries/departments) and appointed cancer control organizations. Documents no longer available online were retrieved from libraries, when possible. Although these documents served as the main source for the inquiry, other sources were also used such as conference proceedings, reports from patient and other stakeholder coalitions, newspaper articles, as well as documentation forwarded to study authors by key informants, and personal correspondence between study authors and government officials and/or cancer control experts. In addition, targeted searches in PubMed on cancer control programs and policy interventions in each of the selected jurisdictions were conducted to complement the grey literature with published papers on program components, activities, and accomplishments. The search of documentation covered two periods: (1) from 1995 to October 2003 (on which the preliminary report to the Cancer Ministry Committee was based) and (2) from October 2003 to June Following a validation process of the jurisdictions portrait with the Cancer program directors (see section 2.6), some updated information was included, so that this monograph provides information that is current as of the end of Interviews with key informants Interviews with key informants in the field of cancer control policy and program delivery served as a focal point for the work conducted in relation to the initial request made by the Ministry of Health. One important goal was to gain insights regarding the perceived strengths and weaknesses of cancer control programs and strategic plans as well as the lessons learned with respect to reform implementation. These semi-structured interviews, conducted from April 2003 to April 2004, provided a historical perspective and contained insider information about events and activities that shed light on the publicly available documentation. The interviews provided an opportunity to validate the descriptive and analytical information obtained from other sources. The interview guide (see Appendix 2A) was developed iteratively in consultation with Québec policy-makers. A convenience sample was selected mainly based on the snow-balling technique, with the aim to recruit 3-4 interviewees involved at each level of decision-making (see Table 1). 15 It is important to bear in mind that information on cancer control planning and implementation is rapidly changing, therefore, some information may be outdated. 7

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Table 1. Sampling framework for key informants Level of decision-making Macro Meso Micro Interviewees Government National strategy Agency/Program Regional health authorities Networks Institutions/Centers Clinical leaders Community resources Patient groups/representatives Inclusion of jurisdictions for the interviews was based on the following criteria: (1) jurisdictions that, following initial review of available written documentation, appeared to be leaders in implementing change; (2) jurisdictions where substantial and rapid changes were taking place that could not be appropriately tracked with available written documentation; and (3) jurisdictions for which the available literature (published and grey) was not sufficient to properly document the components retained for analysis. Evidently, not all jurisdictions were included. For example, interviews were not conducted in France because regular progress reports (at 6, 10, 12, and 24 months) published by the Ministry of Health were sufficient. Forty-three interviews were conducted in five jurisdictions: 13 for Canada; 10 for British Columbia; 8 for Ontario; 7 for England; and 5 for New Zealand. Interviews were transcribed and imported in NVIVO software for coding and analysis. A coding scheme was developed based on the topics in the interview guide and on major themes that emerged following the independent reading of a subset of interviews by four researchers. The final version of the coding scheme was validated by reaching consensus among the researchers. 2.6 VALIDATION BY PROGRAM DIRECTORS For all nine jurisdictions, cancer control program/agency directors or a key member of the national/provincial cancer governing organization were invited to provide feedback on this monograph. Jurisdictions representatives were instructed to comment on the accuracy and completeness of the information gathered relating to their respective jurisdiction. All jurisdictions have been validated except for Canada and New Zealand. 8

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3. INTEGRATED FRAMEWORK An integrated framework was designed to provide a systematic approach to describing and juxtaposing dimensions of cancer control interventions operating within the selected jurisdictions. The framework acknowledges the following considerations: 1. Cancer is a chronic condition, requiring a comprehensive approach that includes prevention and screening, as well as a full spectrum of organized health care services 2. Complex health policy and programs (interventions) cannot be treated as black boxes independent of their social and political context 3. An assessment of the relevance, coherence, and effectiveness of cancer control interventions must begin with a clear descriptive account of their design, governing approach, means of implementation, main accomplishments, and impact. This chapter presents the main steps leading to the development of this integrated framework. Our building process begins by first emphasizing cancer as a chronic condition and examining the scope of cancer control. Next, we highlight the commonalities and differences among a selected group of existing frameworks pertaining to cancer control planning and implementation, prevention and management of chronic conditions in general, and the delivery of care in health systems. The resulting integrated framework is then presented, mapping its elements to the main analytical categories guiding our review: design, governance, implementation, and context. 3.1 CANCER AND THE SCOPE OF CANCER CONTROL Cancer encompasses more than 100 different diseases characterized by uncontrolled cell growth, affecting different organs and tissues (WHO, 2002). 16 While some cancers evolve slowly or respond well to treatment, others can be highly aggressive or almost always lethal. The cause for many cancers remains uncertain, albeit a number of modifiable risk factors have been identified. 17 Cancer is viewed as a chronic condition, 18 and, like all chronic conditions, it requires ongoing management over a period of years or decade, 19 and it may have a prolonged course that does not resolve spontaneously, and for which a complete cure is rarely achieved. 20 For example, 16 World Health Organization (WHO) National cancer control programmes. Policies and managerial guidelines, 2 nd edition, Certain risk factors tend to be more commonly involved in the manifestation of specific cancers (e.g., exposure to ultraviolet radiation from the sun and skin cancer; tobacco in lung cancer), whereas other risk factors such as unhealthy food habits and physical inactivity tend to be implicated in more than one type of cancers. See Brownson, RC and Petitti, DB. Applied Epidemiology, Oxford University Press, New York, Chronic conditions include: (1) non-communicable diseases (e.g., cancer, heart disease, diabetes, and asthma), (2) persistent communicable conditions (e.g., HIV/AIDS, tuberculosis), (3) long-term mental disorders (e.g., major depression, schizophrenia), and (4) ongoing physical/structural impairments (e.g., amputations, blindness, and joint disorders). See World Health Organization. Innovative Care for Chronic Conditions: building blocks for action; global report. WHO Geneva, 2002, p World Health Organization. Innovative Care for Chronic Conditions: building blocks for action; global report. WHO Geneva, 2002, p Brownson, RC and Petitti, DB. Applied Epidemiology, Oxford University Press, New York,

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once a cancerous condition is diagnosed, a treatment program is implemented that includes managing side effects. After treatment is completed, life-long surveillance and compliance with recommended treatment (e.g., maintaining a healthy lifestyle; taking medication; rehabilitation) should continue to prevent recurrence of the cancer or the development of a new cancer. 21 Cancer and chronic conditions alike challenge the efficiency and effectiveness of the health care system, wherein the primary focus is to respond to acute problems. At a global level, it has been recognized that the provision of quality care that responds to the needs of individuals with long-term health problems requires making a paradigm shift in the way that health care systems operate and interact. 22 Such a shift would have direct implications for patients, families, health care workers, as well as organizations, communities, and the health policy environment. In the past, governments at all levels have viewed cancer as a disease to fight through care and treatment. 23 Over the years, a different approach to fighting cancer has emerged, backed up by evidence that cancer could be prevented. Indeed, it has been estimated that about one third of cancers worldwide 24 and about one-half of cancers in Canada 25 can be prevented with the implementation of evidence-based strategies in health promotion, prevention and screening. This approach is best characterized as cancer control: Cancer control refers to the application of existing knowledge regarding approaches designed to actively prevent, cure or manage cancer. These approaches range from prevention through early detection and screening to treatment, encompassing rehabilitation, pain relief and other 26, 27 forms of palliative care. Cancer surveillance is a key component of cancer control. Table 2 illustrates the progression from the cancer treatment, to cancer care, and cancer control perspectives, 28 highlighting differing focal points-namely; (1) the target population; (2) the structural features related to service delivery; (3) the level of integration related to service delivery; and (4) management. The three perspectives of cancer treatment, care, and control must 21 Zapka JG, Taplin SH, Solberg LI, Manos MM. A framework for improving the quality of cancer care: The case of breast and cervical cancer screening. Cancer Epidemiology, Biomarkers, & Prevention, 2003;12: See p World Health Organization. Innovative Care for Chronic Conditions: Building blocks for action; global report. WHO Geneva, 2002, 99p. 23 Canadian Strategy for Cancer Control. Establishing the strategic framework for the Canadian strategy for cancer control, 2005, p World Health Organization (2003). Global cancer rates could increase by 50% to 15 billion. World Cancer Report provides clear evidence that action on smoking, diet and infections can prevent one third of cancers, another third can be cured. Available at : 25 Health Canada. Progress report on cancer control in Canada, 2004, p. 5. Available at: 26 See Canadian Cancer Society website at: 27 Cancer control is an evolving concept which can also be defined more broadly as the identification, development, promotion, diffusion, and delivery of effective and ethical cancer prevention, screening, and care services and programs for individuals and groups, always with their active participation. See p in Advisory Committee on Cancer Control, National Cancer Institute of Canada. Canadian Medical Association Journal, 1994;151(8). This definition seeks to encompass all activities that contribute to reducing the burden of cancer, including research, advocacy, fund-raising, public education in addition to service delivery. 28 Such shift in the scope of cancer interventions was first mentionned to us by a key informant from British Columbia, and is alluded to in the 2003 BC Cancer Agency Strategic Plan (updated version, September 2005), pp

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be viewed as concentric circles, since each shift (from treatment to care, and from care to control) moves closer to a more globalized approach: from a hospital-based to a system-based delivery setting; 29 from a focus on discrete episodes of care to the notion of continuum of care; 30 from providing treatment to promoting health and preventing disease; from caring for individual patients to ensuring healthy populations; and from working in silos to linking systems. Table 2. Progression from cancer treatment, to cancer care, and cancer control Approach Cancer treatment Cancer care Cancer control Target population Patients diagnosed with cancer Patients diagnosed with cancer and individuals suspected of having cancer Multiple populations: Healthy, suspected of cancer, diagnosed with cancer, in remission, at the end-of-life Structural features Facilities: Centers and hospitals Multidisciplinary teams Patient navigators Networks of providers (within and across regions) Integrated care programs (at local, regional, national levels) Intersectoral (e.g., health and education) and intrasectoral (e.g. public health and health care system) collaborations Systemic approach to knowledge formation, exchange, transfer, and application Participatory decision-making for patients and the public. Level of integration in service delivery Integrated care protocols (care episode) Seamless trajectory of care across services and places (continuum of services) Linkages among public health, health care delivery system, and community services (health system) Management focus Institutional (silo) Continuity/coordination of health care services (transitions between services and places) Health system performance (sustainable, responsive, and efficient health system) 29 Shortell SM, Gillies RR, Devers KJ. Reinventing the American hospital. Millbank Quarterly, 1995, 73(2): The continuum of cancer care spans prevention, early detection, and screening, diagnosis and treatment of new cancer cases, care of survivors, palliative care, and finally support for terminally ill patients and their families. Institute of Medicine. Ensuring quality of cancer care, 1999, p

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3.2 REVIEW OF RELEVANT FRAMEWORKS The following frameworks described in the literature were reviewed to guide the development of a specific framework for our descriptive review: Donabedian s Structure-Process-Outcome (SPO) framework 31 World Health Organization s Innovative Care for Chronic Conditions (WHO-ICCC) framework 32 World Health Organization s framework for a National Cancer Control Program (WHO- NCCP) 33 The Quality in the Continuum of Cancer Care (QCCC) framework (USA) 34 USA Division of Cancer Prevention and Control s framework for Comprehensive Cancer Prevention and Control (DCPC-CCPC) 35 The National Cancer Institute of Canada (NCIC) framework 36 The information drawn from these frameworks was organized according to selected featuresnamely, purpose; scope; guiding values/principles; targeted components; planning process; approach to implementation; and key partners. The result of this analysis is presented in Table 3 below (see Appendix 3A for a detailed description of the individual frameworks). In the following paragraphs, we examine the commonalities and differences among the selected frameworks, draw a number of lessons from this review, and provide reasons why we developed a new integrated framework. The chapter ends with a presentation of our framework. Comparing frameworks not specific to cancer control: It is apparent that the SPO framework limits its scope to the health care setting. The WHO-ICCC framework, in contrast, views the larger community and the policy environment as playing influential roles. Both frameworks encourage the gathering of information (as defined by the framework s main components) to guide the planning process and the targeting of specific aspects of care when implementing changes. However, given the differences in scope, it is not surprising that the process of planning and implementation advanced by the WHO-ICCC framework includes the larger community within which patients and families live and health care organizations operate as well as the political environment. 31 Donabedian A. Evaluating the quality of medical care Milbank Quarterly, 2005; 83(4): ; Donabedian A. The quality of care. How can it be assessed? JAMA, 1988;260(12): World Health Organization. Innovative Care for Chronic Conditions: building blocks for action; global report. WHO Geneva, Available in: World Health Organization. National Cancer Control Programmes. Policies and Managerial Guidelines, 2 nd Edition, WHO Geneva, 2002, 203p. Available at: 34 Zapka JG, Taplin SH, Solberg LI, Manos MM. A framework for improving the quality of cancer care: The case of breast and cervical cancer screening. Cancer Epidemiology, Biomarkers, & Prevention, 2003;12: Abed J, Reilley B, Butler MO, Kean T, Wong F, Hohman, K. Journal of Public Health Management Practice, 2000;6(2): Advisory Committee on Cancer Control, National Cancer Institute of Canada. Canadian Medical Association Journal, 1994;151(8):

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Comparing frameworks for cancer control: The QCCC framework is the only one whose scope is limited to cancer care activities within health care settings; albeit the authors of the framework do emphasize the importance of forming collaborative partnerships with community resources to facilitate patient participation in health-related activities. Although the scope of the DCPC-CCPC framework is at both the state and local levels, the iterative process for planning and implementation can be applied at a national level. In fact, the WHO-NCCP framework incorporates the DCPC-CCPC four phases of cancer program planning and implementation. Both the WHO-NCCP and the NCIC frameworks are aimed at national levels. However, the WHO- NCCP framework advances the cancer care program as part of other health care programs, thereby underscoring a plan that is more akin to a population-based approach. In contrast, the NCIC framework emphasizes the systematic design and evaluation of cancer control programs and the assessment of the effectiveness of the interventions delivered by such programs. When examining the target components of the four frameworks, it is clear to see that components within the WHO-NCCP framework form the types of care scrutinized within the QCCC framework. Moreover, these same components are encompassed within the intervention research component of the NCIC framework. What sets the NCIC framework apart from these two frameworks is its explicit message regarding the importance of basic, clinical, and intervention research as guiding decisions regarding the planning and implementation of cancer activities. Activities and information emerging from the four components of the NCIC framework are expected to provide answers to questions such as: What do we know? Does it work? How should programs be delivered? and Where are we? Similar questions guide the four phases of planning and implementation advanced by the DCPC-CCPC framework and adopted by the WHO-NCCP framework. Juxtaposing all frameworks: When comparing all the existing frameworks presented in Table 3, a few observations are worth noting. First, the SPO framework and the QCCC framework both focus on improving the quality of care. Both frameworks target similar components of care, but use a different organizational scheme. The QCCC framework organizes the analysis of care by specific strategies, which could easily have been organized according to structure, process, and outcome. The SPO framework makes no reference to who would be primarily responsible for reviewing and bringing about needed changes in care; whereas in the QCCC framework, changes would rest with the leadership of the health care organization. Second, a systems view of the health care setting underpinning the SPO framework is also advocated within the WHO-NCCP framework. In the WHO-NCCP framework, structure-process-outcome categories translate into inputs-processes-outputs-outcomes. The inputs refer to the resources, including the health care facilities; The processes refer to how the program organizes the resources; The outputs refer to the direct products of the program activities in actual number figures from the number of individuals served by the program to the amount of resources allocated. Finally, the outcomes refer to the impacts of the program on the people participating in the program, including measures such as the increase in knowkledge among customers and the reduction in incidence and mortality rates. 13

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Third, both the QCCC and the WHO-ICCC frameworks are informed by the Chronic Care Model (CCM), 37 which was developed to improve the management of chronic diseases in a health care organization. The QCCC framework, however, applies the CCM strategies to improve the delivery of care and the transition between the types of care for cancer. In the ICCC framework, these strategies are reorganized according to the levels of the health-care system (micro, meso, macro). The WHO-ICCC framework expands on the CCM model by positing that the broader political environment is comprised of elements that could conceivably serve as strategies (e.g., consistent financing, integrated policies, supportive legislative frameworks, development and allocation of human resources). Fourth, the WHO-NCCP framework can be considered as the counterpart of the WHO-ICCC framework to planning efforts specific to cancer control. As with the WHO-ICCC framework, the WHO-NCCP framework situates essential components of a cancer care program within other health care programs, which are both linked to the larger health system and are tailored to the broad social (political and medical) context. A final observation is a consensus that the purpose – whether it relates to improving care or cancer control specifically – is achieved when multiple key players are involved. Lessons drawn from the existing frameworks: Cancer and chronic disease control programs ought to have a clear purpose, with priorities based on the needs of the target population. Values and principles should guide program activities, planning, and implementation. Targeted components must include program activities that define the spectrum of care from prevention to palliation; strategies that improve and ensure quality of care; leadership for decision making, as well as health care systems (which would include patients, families, health care organizations, communities, and the policy environment). The scope of the cancer and chronic disease control programs ought to be in line with their intended purpose and must guide planning and implementation efforts. Decisions on the next course of action must be guided by evidence-based knowledge emerging from the program outputs and outcomes, as well as the social and political context. In fact, such programs must remain responsive and flexible to the context in which they were originally created and in which they must continue to function. Partnerships ought to be built with individuals across disciplines and activities, as well as within governments and voluntary sectors, including patients and their families. The need for an integrated framework: Although one could argue that one or more of the reviewed frameworks could have been adopted for our purposes, it is important to point out that neither one alone would have been sufficient, considering: (1) the purpose of our study, which is to describe cancer control interventions in their planning, governance, and implementation (and not plan, prioritise or make decisions); (2) the scope of our study, which pertains to the main characteristics of cancer control interventions, i.e., cancer service delivery programs, cancer control strategies and action plans (and not the quality of care or requirements for effective health interventions); and (3) the targeted components, which are focused on macro level aspects, with little emphasis on the patient-health care providers interactions. Moreover, the different points along which the jurisdictions rested in terms of planning and implementation of cancer control interventions, in addition to social and political context called for the need to adopt a descriptive 37 The Chronic Care Model (CCM) was not described in detail given that both the QCCC and the ICCC frameworks are expansions of this model. The four components of the CCM as adopted by the QCCC framework and rephrased as building blocks (micro-meso-macro levels) within the ICCC framework are elements of a systems approach to improving care of patients with chronic illness. See Wagner EH, Austin BT, Von Korff M. Organizing care for patients with chronic illness. Milbank Quarterly. 1996;74(4):

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inquiry, albeit with some comparative approach. The review of existing frameworks nevertheless allowed for the selection of components that were, in general, represented within the selected jurisdictions cancer control programs/plans. 15

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Table 3. Frameworks relevant for cancer control planning and evaluation Selected features Primary purpose Scope Guiding values /principles Specific to cancer control SPO WHO-ICCC WHO-NCCP QCCC DCPC-CCPC NCIC To assess and improve the quality of health care delivery The attributes of health care quality, including the interrelatedness between the structures, processes, and outcomes of health care Efficacy Effectiveness Efficiency Optimality Acceptability Accessibility Legitimacy Equity (these are defined as attributes of care- see Appendix 3A) To improve prevention and management of chronic conditions through changes in the health care system (expansion of the CCM) Requirements for appropriate and effective health care at the patient (micro), organization (meso), and policy (macro) levels Evidence-based decision making Population focus Prevention focus Quality focus Integration Flexibility/ adaptability To guide the development of national cancer control programs Cancer control programs aiming to reduce cancer incidence and mortality, as well as to improve quality of life of cancer patients and families Goal orientation Focused on needs of people Systematic decision making Systemic and comprehensive approach Leadership Partnership Continual improvement, innovation and creativity To guide quality improvement studies and research on the trajectory of cancer care The cancer care continuum, from prevention to palliation in health care settings Patient involvement Productive interactions between providers and patients Accountability (these are implicitly advocated by the framework- see Appendix 3A) To ensure a more comprehensive approach to cancer prevention and control Evidence-based and participative decisionmaking processes to comprehensive cancer control planning and implementation at the state-local level Partnerships Flexibility Practicality (these are implicitly advocated by the framework- see Appendix 3A) To facilitate ressource allocation in cancer control research and interventions through structured process for priority setting. The bridging of the know-do gap with respect to all types of cancer control activities, including research, advocacy, service delivery, etc. (see targeted components) Accountability Ethics Empowerment Efficiency 16

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Table 3. Continued Selected features Targeted components Specific to cancer control SPO WHO-ICCC WHO-NCCP QCCC DCPC-CCPC NCIC Structures: Material resources Human resources Financial resources Organizational structure Processes: Patient activities in seeking care and carrying these out Provider activities in making diagnosis and treatment implementation Outcomes: Patient knowledge, health status and lifestyle changes Patient satisfaction with care Levels of care: Micro level (triad): Patients and families Community partners Health care team Meso level: Community Health care organization Macro level: Policy environment Cancer control programs, namely: Prevention Early detection Treatment Palliative Care Improvement in the quality of care by enhancing: Leadership Delivery system design* Clinical decision support* Clinical information systems* Patient selfmanagement support* (*adopted from the CCM) Four phases related to cancer control planning and implementation: Setting optimal objectives Determining possible strategies Planning feasible strategies Implementing effective strategies Knowledge for decision making, as a separate component Range of cancer control activities classified in 4 categories: Fundamental research Intervention research Program delivery Surveillance and monitoring And linked to a fifth category, which is the hub of the framework: Knowledge synthesis and decision-making Planning process Based on the understanding/tracking of the chain of events of a specific care trajectory (e.g., diagnosis to treatment) Based on the analysis of the components within the triad and the available resources Based on the DCPC- CCPC framework s 4 phases Rests with the leadership of health care organizations, but would likely include key partners Information from the 4 phases feed into central decision making Evidence from the 4 categories is synthesized to guide decision-making 17

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Table 3. Continued Selected features Approach to reform Specific to cancer control SPO WHO-ICCC WHO-NCCP QCCC DCPC-CCPC NCIC Correct those indicators affecting quality of care Begin by making changes where feasible among the components Integrate cancer control program to: Other health programs Health system Broad social context Identify high priority areas for improvement Informed by the lessons learned during the first cycle of planning and implementation Interventions are provided widescale after assessment of their effectiveness is established Key partners Would involve: Patients Providers Administrators Care managers Patients Families Health care teams Community partners Community leaders from local and international organizations, support groups Senior/influential leaders within health care organizations Policy makers Service planners Researchers Information technology designers Support personnel Government and non governmental organizations Health professionals with experience in disease control Cancer experts Patient groups Other health service works Other representatives A leadership team, with a Program Coordinator Board of the cancer control program Network of local coordinators, backed up by Local leaders Public Providers of care Patients Leaders within organized delivery systems Health maintenance organizations Public policy-makers State and community partners in cancer control and prevention State cancer control staff Individuals involved in all four categories Health care providers Fund-raisers Policy-makers Administrator Volunteers Educators Epidemiologists 18

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3.3 RESULTING INTEGRATED FRAMEWORK The resulting integrated framework, illustrated in Figure 1, synthesizes the relevant components presented in the six reviewed frameworks and maps these components onto four basic structural features, corresponding to the main analytical categories of this report: governance, design, implementation, and context. The organization of the integrated framework elements in a circle underscores the iterative process to cancer control planning, implementation, and evaluation advanced by the DCPC-CCPC, the WHO-NCCP, and the NCIC frameworks. This circle is embedded in a rectangular background to highlight the role of the political and social context that shapes and determines how the interventions are planned, delivered, monitored, and evaluated. The organization of selected components according to design, governance, implementation, and context seeks to generate insights into the links from program design to program implementation, while considering the governance and the socio-political context. Governance: Starting at the core of the framework, the circular arrow with the letter G denotes the dimension of Governance, which is the hub of the cancer control intervention. Governance plays a central role in the planning, development, management, implementation, monitoring, and evaluation of cancer control interventions. Governance refers to the purposeful efforts by social, political, and administrative actors to guide, steer, control, and manage the effective implementation of the intervention. It is similar in notion to the component of leadership in the QCCC model. In this study, the governance of cancer control intervention includes a description of key players, structures, functions, and resources. In the field of cancer control, the main governing actors include executive authorities of government, as well as board of directors and executive teams of cancer control governing organizations (see Chapter 6). Design: The circular platform comprising six components refers to the dimension of Design, which is used to refer to the blueprint of cancer control interventions. It sets out statements expressed and agreed upon by key players about how cancer is to be prevented and controlled through planned strategies, components, structures, activities, and targets. The intervention design can be understood from a review of official statements and expressed rationales in cancer control programs, strategies and action plans, as well as in business plans put forth by recognized governing bodies responsible for cancer control. Akin to the input of a system (WHO-NCCP framework), the design platform is characterized by the following six components: 1. Goals and priorities 2. Values and guiding principles 3. Spectrum of cancer services 4. Organizational architecture 5. Service quality facilitators 6. Targets and indicators of outcome 19

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Figure 1. An integrated framework for analysis of cancer control intervention 2. Values and guiding principles 1. Goals and priorities 3. Spectrum of cancer services G 6. Targets and indicators of outcome 4. Organizational architecture 5. Service quality facilitators Implementation loop Design platform 20

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By describing these components, this study articulates cancer control interventions as they are planned by the jurisdictions, and it also provides a basis for cross-jurisdiction examination of similarities and differences (see Chapter 5). Some of those components, namely the organizational architecture, the service quality facilitators, and the targets/indicators of outcome will then be revisited as part of the Implementation dimension (see below). Goals and priorities: A clear statement of goals (sometimes referred to as overall purposes or aims) is the first step of the planning process. Goals define the optimal state of affairs that can be attained as a result of program actions or activities. 38 Whereas the goals express the most desirable, the priorities are a selection of the most necessary actions to be taken, considering the actual policy and socio-economic context. The setting of priorities for cancer control intervention may be informed by a number of aspects including: the current health policy priorities; the values of the governing organization; the health gains associated with the different goals and actions being considered; and the available resources (referring to people, staff, finance, facilities, techniques, methods, among others – as explained in the DCPC-CCPC and WHO-NCCP frameworks). Values and guiding principles: Cancer control plans and programs, as well as cancer control governing organizations usually make reference to a number of values, guiding principles and/or key concepts (such as patient-centered care, population-based approach, etc.) to guide the actions to be taken. An examination of these values, guiding principles, and concepts sheds light on design by informing the logic between the stated goals and the different components and activities. Spectrum of cancer services: In cancer control, the range of health services provided is conceived of as a continuum that includes activities in prevention through palliation. This spectrum is similar to the types of care encompassed within the cancer care continuum described in the QCCC framework and to the program delivery component of the NCIC framework. However, such a spectrum is only one facet of cancer plan/program activities. Another facet includes effective service delivery, namely the organizational architectures and the strategies and infrastructures that will provide ongoing improvement of health services quality (service quality facilitators). These facets of plan/program activities are considered below as separate components in our framework. And while cancer research and education are often considered as part of a comprehensive approach to cancer control (as in the NCIC framework), they are not included here, since this component in our integrated framework focuses on delivery of care. Organizational architecture: Another component of design is deciding how to organize service delivery efficiently. The organizational architecture 39 of cancer care services refers to the particular configuration through which these services are organized and delivered. This relates to the approaches or models for organizing stuctures and settings in which care is delivered, not the actual basket of services. This component is similar, in notion, to the structure component of Donabedian s SPO framework in that it describes the attributes of the settings in which care is 38 Rossi Ph, Freeman HE, Lipsey MW. Evaluation. A systematic approach. Sixth edition, Thousand Oaks, CA, Sage, 1999, p Descriptor borrowed from Kewell B, Hawkins C, Ferlie E. Calman-Hine reassessed: a survey of cancer network development in England, Journal of Evaluation in Clinical Practice, 8(3):

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delivered. However, in our framework the organizational architecture of cancer care services not only includes structures that are visible to patients and their families such as hospitals, community clinics, and patient navigators, but also those that are less obvious such as networks of facilities and of professionals, levels of services (primary, secondary, tertiary), referral patterns, etc. These less obvious structures provide hidden support for many aspects of professional practice, service delivery, and the management of care. 40 While the jurisdictions description of the proposed approach to service configuration is part of the Design component, the accomplishments and progress in organizational reform are considered in the Implementation component. Service quality facilitators: Also part of design are service quality facilitators, which refer to activities, tools/procedures and/or systems that enable the cancer control system to meet the growing demand for cancer services while ensuring the best quality of care possible for all cancer patients and individuals suspected of having cancer. This component can be related to the organizational strategies to improve quality included in the QCCC framework. For the purpose of our study, two categories have been retained for examining this component: (1) System capacity and sustainability; and (2) Quality assurance and improvement. The service quality facilitators that pertain to the system capacity and sustainability category relate to the structure and infrastructure of the health care system and its workforce. These elements provide the means for adequate delivery of services and, therefore, are considered as prerequisites to service quality. The DCPC-CCPC framework, for example, considers efforts at building infrastructure for performance evaluation or reporting procedures as part of the planning process. The service quality facilitators that pertain to quality assurance and improvement comprise tools, procedures, and activities aimed at assuring and improving the quality of the cancer services delivered. Quality assurance most specifically refers to maintaining gains in the delivery of quality services, while quality improvement most specifically refers to supporting the enhancement of service quality. 41 Although quality assurance and improvement activities can be distinguished as noted above, they have been put toghether since many initiatives can contribute to both quality assurance and improvement. 42 While the comparison of jurisdictions over the range of service quality facilitators that have been planned or set up is part of the Design component, a closer examination of their respective accomplishments is considered in the Implementation component. Targets and indicators of outcome: Once programs and plans have set their goals and priorities, and have proposed ways and means to accomplish these goals and priorities, they need to have 40 Kewell B, Hawkins C, Ferlie E. Calman-Hine reassessed: a survey of cancer network development in England, Journal of Evaluation in Clinical Practice, 8(3), p Quality assurance seeks to demonstrate that a service fulfills or meets a set of requirements or criteria. Conducting quality assurance activities involve comparing actual processes and/or outcomes of health care services to predefined criteria or pre-selected requirements. Quality improvement refers to the betterment or enhancement of a service. When enhancements are ongoing or occur repeatedly over time, the process is known as continuous quality improvement. 42 For example, the New Zealand Minister of Health (See Improving quality: A systems approach for the New Zealand health and disability sector, 2003) views quality improvement as including continuous quality improvement and quality assurance even though there are statements to the effect that quality assurance is focused on maintaining gains, whereas quality improvement activities center mostly on the search for continuous improvement in services. 22

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specific end-points that will assist in determining whether progress is being made and, most importantly, whether the goals, priorities, and actions have been achieved. This last component of design makes reference to cancer control plans and programs that have explicitly stipulated some measurable targets or indicators of outcome. While the description of the actual end-points is part of the Design component, the assessments conducted by the jurisdictions (via independent bodies or by their cancer control governing organizations) to determine the impact of the cancer plan or program is considered in the Implementation component. Implementation: The outer ring of the integrated framework, divided into two sections, represents the Implementation of the cancer control interventions. In its usual meaning, the term implementation refers to a process that involves a complex mix of strategies, resources, structures, and tasks to move a planned intervention into action or practice in order to achieve the intended goal. 43 For the purpose of this study, we use the term implementation to comprise two elements: (1) Main Accomplishments, as in the concrete actions to fulfilling the cancer control plan and/or program and (2) Impact as it relates to activities conducted to assess the outcomes of such program/plan. This last component underscores the outcome indicator of the SPO framework. Accordingly, then, the emphasis is not on describing the processes by which strategies, resources, or tasks were put into practice, 44 but on describing the results of such processes. That is, the focus is on describing the initiatives that have been put into place (main accomplishments) and the progress made in terms of achieving stated goals by meeting targets and indicators of outcome (impact). More specifically, Main Accomplishments comprise a description of major achievements in cancer control plan/program implementation, including service organization reform and service quality facilitators. Also considered in this component are distinctive features of the jurisdictions that could be viewed as exemplar attributes. The Impact component acknowledges available internal and external assessments of the cancer control plan/program. 43 Beyond the horizon. A framework for policy comparisons. CMPS Workbook, p Our restricted and mostly static view of implementation should not be confused with the usual topics of implementation studies, which may include: (a) describing case stories about implementation experiences, (b) measuring the extent and processes of implementation attempts, (c) explaining the discrepancy between the planned intervention and its practical translation and/or (d) providing guidance about how to anticipate implementation problems. See Denis JL, Champagne F. L analyse de l implantation : modèles et méthodes. The Canadian Journal of Program Evaluation, 1990;5(2):

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Context: Context refers to the physical, organizational, cultural and political settings in which programs and actors are embedded and in particular those setting aspects that influence program success. 45 Considering the context of cancer control interventions allows for a better understanding of the particular trajectory of each jurisdiction. The influence of context on the planning and the implementation of cancer control programs is well underscored by the WHO- NCCP, the DCPC-CCPC and the NCIC frameworks. Elements of context are also included in the QCCC and WHO-ICCC frameworks as the broader community and the policy environment respectively. Elements of context that are considered in this study include: historical development of cancer control programs or plans; epidemiology data; health care systems within which cancer control programs or plans must operate; cancer control investments; and availability of resources within the larger health system, among others. 45 Mark MM, Henry GT, Julnes G. Evaluation. An integrated framework for understanding, guiding, and improving public and non-profit policies and programs. Jossey-Bass, San Francisco, 2000, p

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4. HISTORY OF POLICY DEVELOPMENT This chapter provides a succinct description of the major features of cancer control policy and program development for each selected jurisdiction outside Québec. The policy development history was delineated by mapping official documents and records of salient events along five stages of the policy development and implementation process: (1) Strategic development; (2) Formal Strategy, Action Plan and/or Program; (3) Progress of Implementation; (4) Evaluation of Implementation; and (5) Outcome assessment. 46 Such classification of the available policy material is presented in the form of a milestone table included in appendix 4A. This exercice suggests that the selected jurisdictions are at different stages in their policy and program development. While the task of comparing jurisdictions for best approach or most efficient strategy is not the purpose of the present study, we can nevertheless draw insightful conclusions from juxtapositing their histories. 4.1 HIGHLIGHTS OF THE JURISDICTIONS All jurisdictions have an interesting history regarding the development of their cancer control policy. For the purpose of brevity, we have grouped jurisdictions according to hallmarks of their development history. These groups are not mutually exclusive; some jurisdictions could fit in more than one. Canada, France and New Zealand: Progress linked to cancer becoming a national priority A first observation worth noting is that most jurisdictions underwent multiple attempts at cancer control reform. In both Canada and France for example, the planning and implementation of the 2002 Canadian Strategy for Cancer Control and Cancer Plan (France) were preceded by the publication of reports and action plans that failed to be implemented (see shaded boxes below). Similarly, New Zealand was very near to producing a strategy in 1996, but the initiatives were slowed down by changes in government (in 1996) and changes in health system governance. 47 In all three cases, the development and/or implementation of current strategies was set in motion by newly elected governments that considered cancer as a top priority. In 1999 a new government was elected in New Zealand and cancer became one of thirteen priorities of the NZ Health Strategy. In France, the need for a national cancer control strategy has been supported by medical consensus and patients demands. In addition, substantial progress followed the election of President Chirac in May 2002, who declared that cancer control would be a top priority during his five-year mandate. In Canada, the recently elected conservative government 46 Although these five stages are presented in a linear fashion, the development and implementation of cancer control policy is truly an iterative process: First, a jurisdiction may go through multiple attempts at establishing a successful (agreed upon and implemented) policy. Each renewed attempts can be viewed as strategic planning cycles interspersed by transforming events and characterized by the multiple strategic planning documents being published at regular intervals. Second, the process underlying policy development and implementation is iterative in the sense that cancer control strategies and programs evolve with time, and lessons learned about what works or does not work during a previous cycle of operations provides the impetus to bring some changes to the next cycle. For example, new strategies can be added to address different facets of the problem; new priorities can be formulated and enforced; different implementation strategies can be tested if previous ones were not deemed effective; and a new approach to the problem could be developed altogether. 47 Based on interviews with New Zealand key informants. 25

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(2006) committed 260 million dollars toward the implementation of the Canadian Strategy for Cancer Control over the next 5 years. History of policy/program development Canada The first significant efforts to develop a national strategy for cancer control originated in the late 1980 s. The Cancer 2000 Report, published in 1992, comprised more than a hundred recommendations, but the concerned authorities did not act on those recommendations. In 1999, senior executives from government (Health Canada) and non-governmental organizations (Canadian Cancer Society, National Cancer Institute of Canada and the Canadian Association of Provincial Cancer Agencies) formed a Steering Committee to initiate and lead a new strategic development process. In 2001, a meeting was held to establish top priorities and to finalize governance structure. In 2002, The Canadian Strategy for Cancer Control (CSCC) was established and the Steering Committee was dissolved. A new Canadian Council for Cancer Control took over to oversee the implementation of the CSCC priorities. The CSCC is aimed at creating a virtual network among all cancer stakeholder organizations and governments to facilitate sharing of cancer knowledge and best practices. The CSCC planning and consultation process involved over 700 Canadians from the health and allied professions, academia, the voluntary sector, all levels of government and cancer patients/survivors. Until 2006, however, lack of political commitment, coordination, and sustained funding impeded the implementation of this national strategy. Important efforts had to be deployed by the CSCC Council and advocacy and support groups (National Cancer Leadership Forum, Canadian cancer Society, Cancer Advocacy Coalition of Canada) to keep the national strategy on the political agenda (including the Campaign to Control Cancer). The most prominent impact from this mobilization included: (1) the introduction in February 2005 of a Bill (S-26) to the Senate that would ensure the recognition of the national strategy; (2) the publication in April 2005 of Establishing the Strategic Framework for the Canadian Strategy for Cancer Control, updating key reports published on the CSCC and introducing a scheme for measuring the cost-benefit ratio of successful implementation of the National Strategy; and (3) a vote in the House of Commons on June , in favour of a motion to fully fund and implement the CSCC. In April 2006, a new government was elected that committed 260 million dollars for the implementation of the CSCC over the next five-years ( ). The implementation is guided and supported by the Council s Business Plan for the CSCC and governed by the newly established Canadian Partnership Against Cancer Corporation. 26

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History of policy/program development France In France, much progress has occured since President Chirac signed the Paris Charter in 2000, 48 and declared after re-election in May 2002 that cancer control would be a top priority during his second five-year mandate. This new momentum comes after a series of public reports (1998 to 2001), 49 depicting the failure of prior policy initiatives and the unmet needs of patients. In 1998 and 2000 for example, the League against Cancer organized two patient conventions that allowed patients to voice their suffering, needs and expectations to the Health Minister. The Minister responded by the publication of the Programme national de lutte contre le cancer , which unfortunately was not implemented due to lack of funding and leadership. After re-election of President Chirac in May 2002, a Commission d orientation sur le cancer (Steering Commission on cancer) was set up to document the current situation. The Commission benefited from the input of many groups, including patients, health care professionals, and associations involved in the field. The Commission noted that France had the worst premature mortality rate in cancer across Europe and that research efforts were not sufficient. The Commission s report, published in January 2003, comprised 11 recommendations that formed the basis for the drafting, by the Minister of Health and the Minister of Research, of the five-year strategic plan, entitled: Cancer. A nation-wide mobilization plan. This five-year Cancer Plan ( ) was submitted to the President of the Republic who presented it to the public in March The Plan comprises 70 measures to be implemented by 2007 according to a strict timeline and to be monitored using key indicators. The creation of an Institut national du cancer (INCa, National Cancer Institute), one of the Commission s recommendation, was made into law in 2004 (France s new Public Health Law). Implementation of the new Cancer Plan began in 2003 under the governance of a Mission interministérielle (National Project Taskforce), appointed by the Prime Minister to coordinate and monitor the first phase of the implementation. It operated from , until the newly created National Cancer Institute took over in Renewed momentum was prompted by a speech given by the President of the Republic in April 2006, which provided an update on the accomplishments of the National Cancer Institute and announced new projects. 48 The Paris Charter is a founding text that recognises the fight against cancer as an international priority. It was signed by President Chirac during the World Summit Against Cancer for the New Millennium, hosted by UNESCO in Paris in For details see: Sénat. Rapport d information #31 sur la politique de lutte contre le cancer de la Commission des finances du Sénat, October 1998; Ligue nationale contre le cancer. Les malades prennent la parole. Le livre blanc des 1ers États généraux des malades du cancer. Paris, France : Ramsay, 1999; Cours des comptes. Rapport sur la sécurité sociale. Chapitre 7. La mise en œuvre de la politique de santé : l exemple de la lutte contre le cancer, September 2000; Ligue national contre le cancer. Deuxièmes États généraux des malades contre le cancer, November 2000; Sénat. Rapport de la Mission d information sur la politique de lutte contre le cancer à la Commission des affaires sociales du Sénat, June

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History of policy/program development New Zealand Work to develop a broad level framework for cancer control dates back to 1996, when a number of working parties were set up to look at palliative care and the non-surgical aspects of cancer treatment. The working parties produced documents in 1999, which were later published by the Ministry of Health as a reference paper entitled: Improving Non-surgical Cancer Treatment Services (2001). Also in 1999, a workshop was organized by the NZ Cancer Society to address the rising incidence of cancer. At the end of that year a new government was elected and cancer became one of 13 priorities of the NZ Health Strategy (2000). In 2001, a Cancer Control Trust was established as a partnership between the Ministry of Health, The NZ Cancer Society and other non-governmental organizations. The Cancer Control Trust prepared two reports that laid the groundwork for the development of a National Strategy. In addition, the NZ Palliative Care Strategy was released by the Ministry of Health. Later that year, a Cancer Control Steering Group was set up along with a number of expert working groups to establish priorities, following the Canadian model. In December 2002, a first draft of the National Strategy was submitted for public consultation. One important goal of the Strategy would be to improve access and care fo the Māori and Pacific populations that had the worst health outcomes. The NZ Cancer Control Strategy was finally launched by the Health Minister in Later that year, a national workshop entitled From Policy to Action: Working Together to Implement the Cancer Control Strategy was held to begin the planning for the implementation. The Workshop provided an opportunity for those with expertise and responsibility in various aspects of cancer control to identify what was needed to ensure effective and ongoing implementation and to contribute to the development of an implementation plan. A Cancer Control Taskforce was then set up to produce an action plan. The NZ Cancer Control Strategy: Action plan was published in March A Cancer Control Council was then appointed by the Health Minister and a first meeting of Council took place in June Moreover, a Ministry of Health Principal Advisor Cancer Control was nominated to provide guidance to the Director-General of Health, the Ministry of Health and to the Minister of Health on issues relating to cancer control. In 2006, a Cancer Control Work Programme Steering Group comprising representatives from the Health Ministry and the Cancer Control Council, oncology experts, and other stakeholders, was formed to begin implementation. Ontario: A second start in the aftermath of the radiotherapy delay crisis Ontario also witnessed multiple attempts at cancer control reform. However, its path is somewhat different from that of either Canada, France or New Zealand. Ontario s policy and program development can be described in two major phases: The first extends from 1994 to 2000, and the second began in 2001 with the appointment of Alan Hudson as head of the Cancer Services Implementation Committee and shortly thereafter as CEO of Cancer Care Ontario ( ). In between those two phases, however, Ontario experienced an important crisis regarding long delays for radiotherapy, which led to the transfer of many patients to the United States for their treatment. While this problem was not unique to Ontario it surfaced during our analysis of British Columbia and New Zealand, and it also affected Québec the Ontario Ministry of Health and Long Term Care responded by bringing radical changes in both the cancer Agency s mandate, governance, and organization of cancer service delivery. In 2004 Cancer Care Ontario launched the Ontario Cancer Plan an evidenced-based provincial roadmap, which 28

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builds on a sustained strategic planning efforts (that led to several specific planning documents, see shaded box below) to reduce cancer rates and to improve the quality of care. History of policy/program development Ontario In Ontario, initiatives to improve cancer control date back to the early 1990s. A first assessment of the entire system was undertaken and recommendations were published in 1994 in a report entitled Life to gain : A Cancer Strategy for Ontario. It highlighted a number of problems including the lack of service coordination, lack of clinical practice standards, variations in access to care, and the lack of the patient perspective in cancer policy planning. This report, which can be considered as the first provincial cancer control strategy, suggested the development of a Provincial Cancer Network. Such a Network, established by the Ministry of Health and Long Term Care, was mandated to develop a provincial framework for cancer control that would be implemented through regional networks. Following a long consultation process, the Provincial Cancer Network recommended the creation of Cancer Care Ontario (CCO) to monitor and coordinate the provincial cancer control system. CCO was launched by the Ontario Premier in 1997 with the mandate to integrate and coordinate all cancer services in the province. CCO took over the Ontario Cancer Treatment and Research Foundation that had been established in In 1999, a crisis occured in the management of cancer services in Ontario. The Provincial Auditor of Ontario found that only 32% of patients received radiotherapy within the four-week recommended waiting period. Many patients were sent to the United States to get treatment. The Government requested a thorough review of CCO and cancer services implementation thoughout Ontario. The Cancer Services Implementation Committee submitted its report in The report recommended important changes in the Cancer Agency s mandate so that it would no longer be responsible for the direct delivery of care through its regional cancer centers. CCO would instead become an advisory body to the Ministry on all aspects of cancer control and services. In addition, CCO would be responsible for planning and coordinating all cancer services across the province. In 2002 a Cancer Quality Council of Ontario (CQCO) was created that would come to serve as CCO s impetus to move toward cancer control system performance monitoring, managing, and reporting. From 2002 to 2004, CCO published important strategic plans including an Information Management Strategy (2002), Cancer 2020 which is an action plan for cancer prevention and early detection prepared jointly with the Canadian Cancer Society (2003), and a Four-Point Strategy to reduce waiting time, prepared by the Cancer Quality Council (2004). Also in 2003, CCO senior executives published Strengthening the Quality of Cancer Services in Ontario, which provided an assessment of the quality of cancer services in Ontario and identified gaps in the ability to measure quality. In November 2004, CCO published the Ontario Cancer Plan The development of the cancer plan involved more than 3000 people across the continuum of care. The plan was informed by a regional planning process, a corporate planning process, and it also underwent a formal review by international experts. Progress of implementation is reported in Ontario Cancer Plan: 2005 progress report and in Report on Cancer 2020: A Call for Renewed Action on Cancer Prevention and Detection in Ontario, published in June England: A concerted health policy effort to overcome poor cancer survival rates In England, efforts at a concerted policy approach to improve cancer care began in the mid nineties when results from the Eurocare study examining 5 year cancer survival rates in European 29

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countries demonstrated that England was faring well below (by 5%) the European average for all common cancers (lung, breast, colorectal and prostate). 50 Moreover, around the same time as this study, regional variations in cancer treatments and outcomes aross the UK were surfacing. The reason underlying Britian s poor performance in cancer control was attributed to the quality of care and its integration, 51 including: low numbers of radiotherapists and medical oncologists; poor access to specialist cancer care; lower use of chemotherapy; wide variations in drug accessibility depending on health authority, which means similar patients treated at the same cancer center may have different treatments depending on where they live (postcode lottery); and wide variation in clinical outcomes for common cancers in differents hospitals, which in some cases could be linked to a volume effect. In 1995 a landmark report was published that recommended a fundamental restructuring of cancer services in England and in Wales (Calman-Hine report), which would include the creation of cancer services networks. Soon thereafter a number of important initiatives were undertaken, namely to reduce variations in care. In 1999 reforms took a faster pace, with the creation of a National Cancer Action Team to oversee the creation of cancer networks, and the appointment of a National Cancer Director with the mandate to prepare a cancer plan specific for cancer. The NHS Cancer Plan was published in This plan is the first-ever comprehensive strategy for tackling cancer from prevention to palliative care, at a national level in England. History of policy/program development England In 1994, the Chief Medical Officers of England (Dr. Kenneth Calman) and Wales (Dr. Deidre Hine) established the Expert Advisory Group on Cancer to develop a policy framework for commissioning cancer services. The Expert Advisory Group on Cancer reviewed the international literature on cancer survival in relation to patterns of care and noted that improved outcomes were associated with access to specialised care. Building on previously published reports by the Association of Cancer Physicians, the Royal College of Physicians and the Royal College of Radiologists, the Expert Advisory Group on Cancer prepared a report entitled: A Policy Framework for Commissioning Cancer Services that recommended a fundamental restructuration of cancer services in England and in Wales (widely known as the Calman- Hine report). Other major recommendations included a shift toward patient-centered care, the development of palliative care services, professional education, audit activities and entry of patients into clinical trials. In 1996, the Department of Health began the production of a series of evidence-based reports setting out how services for each type of cancer should be organized and commissioned (Improving Outcomes Guidance). In 1999, a target was set of a maximum 2-week wait between an urgent referral from a General Physician and a hospital clinic appointment for breast cancer. 52 Important steps 50 Coebergh J, Sant M, Berrino F, Verdecchia A. Survival of adult cancer patients in Europe diagnosed from : the EUROCARE II study. European Journal of Cancer, 1998;34: Sikora K. Cancer survival in Britain. Is poorer than that of her comparable European neighbours. BMJ 1999;319: Department of Health. Health Service Circular 1999/205: Cancer waiting times achieving the two week targets. Available at: Article/fs/en?CONTENT_ID= &chk=ZPJu67 30

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were taken to improve the pace of reform: (1) a national Cancer Action Team was established to oversee cancer networks implementation; (2) a National Cancer Director (NCD) was appointed to develop and implement a national cancer program for England; and (3) a cancer services collaborative was established to support the NHS in England and its partner organizations in the task of redesigning more efficient services and improving experiences and outcomes for patients. In July 2000, the National Health Service (NHS) launched The NHS Plan, which sets out a 10-year process reform and a program of sustained investment to make the NHS more responsive to patients. 53 In that same year, a manual describing the standards and performance indicators for the management of cancer services by cancer networks was also published. In September 2000, the Department of Health launched The NHS Cancer Plan for England, which provided a policy framework for cancer services. A Cancer Taskforce was then secured into place to lead national implementation of the plan, supported by a substantial financial commitment by the government. Progress of implementation has been documented in many different reports, including progress reports published in 2001, 2003 and 2004 by the National Cancer Director and newsletter from the National Cancer Action Team, financial tracking exercises by the Department of Health, and independent assessments and audits. In 2006, the Secretary of State asked the NCD to head a Reform Strategy Board to develop the next strategy for cancer services in England. Nova Scotia: Changing governing structures and focusing on improving care Nova Scotia s first comprehensive cancer management strategy came amidst an important reform in the governance of cancer services that was marked by the abolishment, in 1996, of the Cancer Treatment and Research Foundation of Nova Scotia, a provincial organization dedicated to cancer treatment, surveillance and research. In 1998, a provincial program called Cancer Care Nova Scotia (CCNS) was established within the Department of Health and a Commissioner was appointed. The strategic directions that were then taken by the Department of Health regarding cancer control were based on the Cancer Action Committee 1996 Report entitled Cancer Care Nova Scotia, A Plan for Action. Those strategic directions were detailed in the Commissioner s contract, whose appendix states the objectives, principles, activities and responsibilities of all concerned parties. 54 While the Cancer Care Nova Scotia (CCNS) Program is addressing cancer prevention and screening, a strong focus is however given to : (1) improving patients experience of care; and (2) improving service quality. In 2006, the Commissioner resigned. History of policy/program development — Nova Scotia From 1981 to the mid nineties, the management of cancer services delivery and the cancer registry as well as the coordination of cancer research and treatment development were the mandate of the Cancer Treatment and Research Foundation of Nova Scotia, a Crown society. 55 During the nineties, serious concerns were raised regarding access to, and quality of, oncology services. At that time, the Province had among the highest rates of cancer incidence and mortality in Canada. In 1993, an Advisory Committee from the Metropolitan Hospital was asked to review cancer services delivery and organization in the Province, with a focus on the Halifax region. The report submitted by the Advisory Committee to the 53 Department of Health. The NHS Improvement Plan: Putting People at the Heart of Public Services. June 24, Accessed November 9, Available at: 54 Personnal communication, Dr. Andrew Padmos, CCNS former Commissioner, November 10, 2006 letter. 55 Nova Scotia Archives and records Management. Government Administrative Histories Online. Available at: 31

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Department of Health identified a number of important problems with the provision of cancer services in Nova Scotia and proposed a comprehensive framework to improve the provincial cancer control system. 56 The report suggested the creation of a cancer care governing body, Cancer Care Nova Scotia (CCNS), to reduce the fragmentation of cancer services and programs that had developed in the Province. In 1994, an important reform of the health care system occured, that led to the abolishment of hospital governing boards and the creation of Regional and Community Health Boards. In 1995, the Department of Health established the Nova Scotia Cancer Action Committee to develop an action plan for a coordinated and systematic approach to cancer care. The Cancer Action Committee was made up of physicians, academics, nurses, administrators as well as representatives of the Canadian Cancer Society and of the Department of Health. The Comittee submitted its report to the Deputy Minister of Health in The Report, entitled Cancer Care Nova Scotia: A Plan for Action was presented as a comprehensive, integrated and accountable cancer management strategy on cancer care, standard setting, and evaluation. One of the recommendation of the Committee was to establish Cancer Care Nova Scotia (CCNS) as a separate legal entity with a governing board and an appointed CEO to coordinate, strengthen, and evaluate cancer activities in the Province. However, this was the only recommendation not supported by the Department of Health at that time. The Cancer Treatment and Research Foundation was abolished, 57 but its activities were confided to the Queen Elizabeth (QE) II Health Sciences Centre in Halifax until 1998, when CCNS was established as a provincial program of the Department of Health. A Commissioner was then recruted who combined the following three roles: (1) Commissioner and director of CCNS, accountable to the Deputy Minister of Health; (2) Director of the Cancer programme at QEII Health Sciences Centre; and (3) Associate Dean in oncology at the Faculty of Medicine of Dalhousie University. Hence the Commissioner s position was designed to be an intersection for all cancer control activities and plans. 58 Following the appointment of the Commissioner, the CCNS work program was undertaken, first with the creation of cancer site teams (1999) responsible for producing clinical practice guidelines and second with the establishment of several initiatives including: CCNS District Cancer Model (2000) for integrating primary and secondary cancer services; Action in your Community against Tobacco program (jointly with the Canadian Cancer Society, 2001), and the CCNS Patient Navigation program (2002) following a oneyear consultation process with all cancer stakeholders in A mid-course assessment of the CCNS governance, leadership, and program implementation was performed in 2001, which noted that (1) substantial progress was made, albeit most activities were considered to be works in progress. This assessment also indicated that the most urgent issues needing attention were related to standards development and the implementation of a quality program with clear accountability structures and procedures to deal with variations in care. In 2004 and 2005, a survey of cancer patients experience with the provision of care showed high satisfaction rates. In 2006, the Commissioner resigned. Alberta and British Columbia: New provincial strategies after longstanding cancer control programs Alberta and British Columbia are renowned for their well developed cancer control programs that are governed by provincial agencies, the Alberta Cancer Board (ACB) and the BC Cancer Agency (BCCA) respectively. However, the fact that those jurisdictions have a specific organization managing a well developed program for cancer control research and service delivery does not preclude the need to improve their provincial cancer control systems. 56 Metropolitan Hospital Advisory Committee. Oncology services : A strategy for comprehensive cancer control in Nova Scotia. Halifax; Cancer Treatment Reseach Foundation Act R.S. 1989, c.55. repealed , c18 – February Personnal communication, Dr. Andrew Padmos, CCNS former Commissioner, November 10, 2006 letter. 32

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Alberta: Aligning with the Canadian Strategy for Cancer Control In 1999, Alberta began the process of developing a provincial cancer control strategy that culminated with the publication of the Alberta Cancer Control Action Plan in The 48% increase in new cancer cases from 1996 to 2006 in Alberta 59 may explain the substantial investment committed by the government in 2006, and the aggressive goals identified for the year 2025 regarding projected cancer incidence and mortality reduction. 60. History of policy/program development Alberta In Alberta, cancer control activities are led by the Alberta Cancer Board (ACB), a provincial health council created in 1967, and mandated by the Albertan government to deliver cancer care services and to coordinate, in collaboration with the nine regional health authorities, the planning of all the cancer control activities in the province. In 1999, ACB established the Alberta Coordinating Council for Cancer Control (ACCCC) to foster collaboration among health authorities (including ACB), the Canadian Cancer Society, and Alberta Health and Wellness in cancer control activities. ACCCC took the lead in 2002, to develop a provincial cancer control plan in response to the Canadian Strategy for Cancer Control and the provincial Mazankowski Report. A planning forum was held, wherein a steering committee and expert groups were mandated to develop a plan. The Alberta Cancer Control Action Plan (ACCAP) published in 2004, is a customization of the priorities proposed by the 2002 Canadian Strategy for Cancer Control. The Plan also builds on the existing cancer control programs in Alberta and on the recommendations from the Premier’s Advisory Council on Health Report (Mazankowski s Report, 2002). In 2006, the Alberta government committed a 500 million dollars endowment for research, screening, and prevention through the Alberta Cancer Prevention Act. This Act was introduced to solidify commitment to the following three goals set by the government for the year 2025: (1) reduce the projected incidence of cancer by 35 percent; (2) reduce the projected mortality from cancer by 50 percent; and (3) ensure that Albertans diagnosed with cancer do not suffer. British Columbia: New provincal and regional initiatives to enhance the BCCA s provincial program British Columbia is the Canadian province with the lowest cancer incidence and mortality rates. 61 This province is viewed as a pioneer in cancer control in Canada on several fronts. It launched Canada s first cervical screening program in 1949, which included many components of an organized screening program. 62 In 1996, the BCCA established population-based provincial programs that would be regionally delivered and, in early 2000, it established provincial networks, including one for surgical oncology. 63 Until 2001, BCCA received its funding directly from the Ministry of Health Services. 64 In 2001, a major health system reform occured, that 59 Canadian Strategy for Cancer Control Business Plan for the CSCC, p Alberta Cancer Board & Foundation. Possible. Alberta s cancer free future. Alberta Cancer Board and Foundation Annual review 2005/ Milestones. Prevent cancers. Saves lives. Eliminate suffering, 48 p. Available at: 61 Canadian Cancer Statistics 2006, p. 13. Available at: See Canadian Strategy for Cancer Control Business Plan for the CSCC, p Canadian Cancer Statistics 2006 p Carlow DR. The British Columbia Cancer Agency: A comprehensive and integrated system of cancer control. Hospital Quarterly, 2000;3(3): Based on an interview with a BCCA key informant. 33

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involved the abolition of the 52 regional governing entities, and the creation of 5 geographic Health Authorities and the Provincial Health Services Authority (PHSA). The PHSA was created to fund and oversee eight provincial agencies, including BCCA. Major changes in governance subsequently occured for BCCA when the PHSA was created (see governance Chapter for details). More recently, collaborative initiatives were established between the BCCA and the BC and Yukon division of the Canadian Cancer Society to develop the Canadian Strategy for Cancer Control BC and Yukon, and between the BCCA and the Northern Health Authority to develop a Northern Cancer Control Plan (see shaded box below). History of policy/program development — British Columbia In British Columbia, cancer control is led by the British Columbia Cancer Agency (BCCA), a provincial agency established in BCCA is mandated by the BC government to develop and manage a cancer control program for the entire province. The Agency is a population-based cancer control organization, with a well-developed, stable platform for its service, education, and research mandate. As part of the PHSA strategic process that began in 2003, a new Strategic Plan was developed by BCCA to sustain its current provincial cancer control program, while orienting the Agency toward “translational research” activities to further enhance health outcomes. In addition to this new governing arrangement of the BC cancer control system, new provincal and regional initiatives have emerged to enhance the existing BCCA s provincial program, directed at the specific needs of the populations living in the northern part of the province. In 2004 a BC and Yukon Council of the Canadian Strategy for Cancer Control, made up of more than a dozen stakeholders from across the public health spectrum, was formed with the financial support of the BCCA, the BC and Yukon division of the Canadian Cancer Society, and the PHSA. This Council was set up to begin the process of developing a BC and Yukon Cancer Control Strategy 65 to be adapted from the Canadian Strategy for Cancer Control. The Council set up three working groups focusing on prevention, colorectal screening, and end-of-life/palliative care. This strategy has yet to be published. Moreover, in 2005, the BCCA and the Northern Health Authority jointly proposed the Northern BC Cancer Control Strategy, in response to BC Premier s Consultation on Improved Cancer Care in Northern BC. This consultation was set up to determine how to design a comprehensive and integrated cancer care system that could best meet the unique needs of the people of Northern BC, which have the highest mortality rates in the province for all forms of cancer. The BCCA/Northern Health Authority jointly proposed strategy is focused on reviewing and expanding cancer services in Northern BC, proposing short term improvements (e.g., to develop a comprehensive tobacco control strategy, to develop travel assistance, to increase capacity in systemic therapy, etc.) and addressing the need for a Northern cancer program, that would be developed around the creation of a new BCCA Regional Cancer Centre. The Premier s consultation meetings ended in April 2006, no final report has been made public yet. 65 While the number of new cancer cases rose by 16% in BC from 1996 to 2006, it did so by 58% in Yukon. See Canadian Strategy for Cancer Control Business Plan for the CSCC, p

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4.2 KEY FACTORS DEFINING A FAVORABLE CONTEXT FOR CHANGE Our analysis of each jurisdiction s cancer control policy development and implementation trajectories indicates that common problems have directed attention to the importance of strengthening cancer control through coherent strategies and programs. These problems include: Higher incidence and/or mortality rates compared with other jurisdictions Significant inequalities among social and/or ethnic groups with respect to access and provision of services Problems in the quality of care provision, including variations in quality as well as the lack of continuity and coordination of care In addition, an examination of the policy development history suggests that the impetus for cancer control reform implementation has several roots: Some may originate from a turnaround in policy priorities altogether, often as a result of a change in government. In others, even within an established government, a particular crisis (e.g., poor or suboptimal access to services) can capture the attention of policy makers. This can then trigger significant restructuring of priorities and refocusing of resources. Equally possible, a change may be initiated by the cancer control program s governing body as a result of feedback either from progress monitoring of activities or program evaluation. It would appear that it can take a number of years, sometimes up to 5 years following the publication of a cancer strategy, before there is evidence of its implementation. Although we have not performed a detailed analysis of the factors responsible for the timing of implementation regarding cancer control reforms, we have questionned cancer control key informants about the barriers and facilitators of implementing reform (see Appendix 4B for a synthesis of those factors). Among the factors described by key informants, we note the importance of achieving political commitment, having adequate resources, displaying strong leadership, securing clinician and user involvement, as well as establishing frameworks and providing incentives to promote change (and improve performance). Combining the views of key informants with the observations we made through this Chapter, we conclude that cancer control policies, strategies or plans that translate into concrete action are associated with the following conditions: Cancer control is declared a top priority by the established national or provincial government A clear strategy is elaborated, which includes an action plan and specific targets A strong leadership is secured in place and held publicly accountable Significant financial resources are committed to implement reforms Active participation of all stakeholders is promoted in policy planning and implementation Rigorous and regular follow-up of progress is established that entails public reporting. 35

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5. DESIGN The notion of Design refers to the blueprint of the cancer control intervention. It is an expression of how key players involved in cancer control conceive of the cancer problem and of the approaches needed to address it. As defined by our integrated framework (Chapter 3), design describes a number of essential features pertaining to the conceptual aspects of the cancer control intervention; namely: (1) established goals and priorities; (2) underlying values, guiding principles and key concepts; (3) spectrum of planned health services; (4) approaches to health services organization (organizational architecture); (5) strategies and mechanisms for sustaining and improving service quality (system quality facilitators); and (6) targets and indicators to monitor progress and/or assess outcome. This chapter first presents an overview of each jurisdiction s cancer control intervention design, focusing on the policy context within which each jurisdiction must operate. The second section is devoted to highlighting commonalities and differences among the jurisdictions with respect to the six design components. Several tables and shaded boxes were prepared to facilitate understanding of comparative analysis. Some tables and shaded boxes are included directly in the text, whereas others are to be found in Appendices. 5.1 HIGHLIGHTS OF THE JURISDICTIONS Alberta, British Columbia and Canada: A national strategy to complement and enhance provincial cancer control In Alberta and British Columbia, the design of cancer control intervention shows similarities, given that both Canadian provinces have: (1) an appointed organization responsible for cancer control research and service delivery for the entire province; and (2) plans (completed or in progress) for customizing the Canadian Strategy for cancer control to their unique provincial needs. For these jurisdictions, cancer control design rests on a two-prong approach: (1) the core business and strategic direction of the appointed organization; and (2) the recent addition of an overarching provincial cancer control action plan that seeks to increase emphasis on primary prevention and supportive/palliative care, drive quality care (through standards, guidelines, surveillance data, and human resource strategy), and promote research (see below for overview of Canadian Strategy for Cancer Control (CSCC)). Alberta: The Alberta Cancer Board s (ACB) core activities focus on patient care, research, and on prevention/screening. With regard to patient care, the priorities set in the ACB business plan ( ) relate to improving access to services across the province, improving the quality of care, and ensuring adequate facilities for patient care. Efforts in prevention are focused on the coordination of screening programs and the development of prevention programs for cancer and other chronic diseases. The ACB is also responsible for enhancing capacity and coordinating cancer control research in Alberta. Finally another important goal for ACB is to ensure financial health and organizational effectiveness through appropriate use of resources (human, equipment, information, money), including the implementation of a provincial process for approval, management, and evaluation of cancer drugs. In addition to the ACB cancer control program, Alberta has developed the Alberta Cancer Control Action Plan (2004) to provide a provincial 36

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framework targeting the broad range of services that characterizes the spectrum of cancer control (from prevention to palliation). This provincial plan sets out five priorities, drawn from the CSCC priority areas: (1) Standards and guidelines; (2) Primary prevention; (3) Integration and access to psychosocial, supportive, rehabilitative, and palliative care; (4) Human resource planning; and (5) Research. British Columbia: Cancer control research and service delivery is also overseen by a provincial body in British Columbia – The British Columbia Cancer Agency (BCCA). BCCA s core activities focus on the operation of provincial cancer programs for screening, treatment, and care. BCCA is also putting a strong emphasis on research and on producing and disseminating standards and clinical practice guidelines. The BCCA cancer control program is considered by its leaders to have reached a satisfactory state, to the extent where further improvements in health outcomes would now require a translational research strategy 66 in addition to continuous enhancement of the BCCA s cancer control program. BCCA s translational research agenda is at the heart of the Agency s most recent strategic plan (2003). Such an approach is intended to support the clinical application of new knowledge to enhance cancer control at the individual and at the population level. This most recent strategic focus is different from most other jurisdictions studied, that have chosen to put strong emphasis on primary prevention (and more specifically on tobacco control) in order to reduce cancer incidence. 67 However, this is not to say that the BCCA is not engaged in, or does not put a priority on cancer control. There are many initiatives on cancer control through the Provincial Cancer Prevention Program of the BCCA, directed at the community, surgical waiting lists, etc, as well as recently published evidence-based list on Tobacco Control and Obesity from the BCCA and Canadian Cancer Society BC and Yukon sponsorship. In tobacco control however, BCCA places a lot of emphasis on collaboration with the Ministry of Health (Act Now), the BC Health Living Alliance, and CCS BC and Yukon to ensure a program based on risk factor control in the non-cancer populations in the community. Moreover, tobacco control is an important aspect of the Northern BC Cancer Control Strategy, jointly proposed in 2005 by the BCCA and the Northern Health Authority in response to BC Premier s recently completed consultation on improved cancer care in Northern BC. Canada: Key players in both Alberta and British Columbia have been leaders in the establishment of the CSCC (BCCA s current president was the chairman of the CSCC Council and is now the VP of the newly created Canadian Partnership Against Cancer Corporation, the arm s length governance Board of the CSCC). The Canadian Strategy is based on a systeminspired approach for ensuring knowledge formation, exchange, and application within the following seven priority areas across all Canadian jurisdictions, sectors, and disciplines: (1) primary prevention; (2) standards; (3) clinical practice guidelines; (4) rebalance focus (psychosocial, supportive and palliative care); (5) human resources; (6) surveillance; and (7) research. 68 Activities related to knowledge formation are intended to coordinate and cross-reference as many data points and items to arrive at a complete knowledge of cancer in the Canadian population. The knowledge exchange component seeks to ensure the creation of a central information 66 Translational research seeks to link fundamental (pre-clinical) research to clinical research and applications. 67 Regarding health promotion and prevention, most efforts are provided by the Health Ministry (e.g., the BC Center for Disease Control) and by the BC & Yukon division of the Canadian Cancer Society. 68 More recently, two additional action areas were defined: (1) screening/early detection; and (2) performance and quality. 37

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technology-based repository that would enable different stakeholders to contribute their knowledge and to cross reference practices and techniques. The knowledge application component aims to secure in place a common point of reference for provinces and regions to understand their current and projected cancer experiences in the context of Canada, as well as offer evidence-based information for setting local strategic priorities, assessing, and evaluating outcomes. England, France and New Zealand: National plans to improve the cancer patient s journey For England, France and New Zealand, the fight against cancer is a nation wide effort, beginning with the national government serving as the impetus behind all efforts. For these jurisdictions, there are clear synergies between priorities for action endorsed in cancer control action plans and some other government health policies, strategies, and guidelines. Each jurisdiction developed a cancer action plan that addresses the full spectrum of cancer control, which includes all dimensions of the continuum of care (spanning from prevention to palliation) in addition to surveillance, education, and research. Moreover, these three national jurisdictions have engaged in service organization reforms that involve the establishment of cancer networks to improve service integration and continuity of care. England: The design of England s cancer control intervention can be inferred from the content of the NHS Cancer Plan ( ), which comprises eleven chapters, nine of which are devoted to improving the core dimensions of the cancer control spectrum: improving prevention; screening; treatment and care; improving cancer services in the community; cutting waiting times for diagnosis and treatment; investing in staff and in facilities; and research. A main pillar for reform is the creation of cancer networks, as stipulated in the Calman-Hine report, to improve integration of cancer services and to enhance the role of primary care in cancer control; thereby ensuring better continuity and coordination of care. Another important pillar for reform is the production and dissemination of evidence-based guidance and standards for clinical practice and service delivery. Also noteworthy is the focus on achieving timely access to diagnosis and treatment through the setting of maximum waiting time targets. The approach advocated to achieve more efficiency in the process of care, and hence meet those targets, is based on the mapping of the patient pathway across the health system and subsequent identification of bottlenecks, duplication and fragmentation, combined with a capacity/demand analysis (a service redesign process, under the leadership of the Cancer Services Collaborative). Also worthy of interest is the focus and significant investment in palliative care. France: In France, cancer control intervention is shaped by the Cancer plan (Cancer: A nation-wide Mobilization Plan). The cancer plan comprises 70 measures organized by six priority areas spanning the continuum of cancer control: prevention, screening, care (treatment, psycho-social and palliative care), social support, training and research. The cancer plan has a strong prevention focus that aims to bring about a change in culture in terms of reducing smoking, drinking and exposure to work- and environment-related risk factors. A most noticable aspect of the plan is attention directed toward reducing cancer patients social exclusion (e.g. to keep cancer patients in their jobs, to broaden patients access to loans and insurance, to increase at-home health care services, etc.). The overall plan is to bring about changes in the way cancer treatment and care is provided by: (1) identifying a cancer coordination center (3C) in all 38

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institutions offering care to cancer patients; (2) creating multidisciplinary teams; (3) establishing a more humane and supportive cancer diagnosis disclosure procedure; (4) providing better access to diagnostic and therapeutic innovations (including expensive drugs); and (5) coordinating all the players involved through the creation of Regional Cancer Networks. There is also emphasis on supporting research and its role in guiding clinical practice by setting up cancéropôles (research teams linked with referral and best practices hospitals, i.e., teaching hospitals and the Centres de lutte contre le cancer) at the regional and interregional levels. Cancéropôles would, in turn, be connected to the Réseaux régionaux de cancérologie (Regional cancer care networks). New Zealand: In New Zealand, the NZ Cancer Control Strategy and NZ Cancer Control Action Plan provide the framework for an integrated approach to the planning, development and delivery of existing and new cancer control activities and services. The Strategy has six goals covering the cancer control continuum: primary prevention; screening and early detection; diagnosis and treatment; supportive; rehabilitative; and palliative care, as well as research and considerations regarding cancer workforce, surveillance, consumer involvement, and accessibility of cancer control programs to the Māori population. Also worth noting is the consideration given to whānau (close friends) in addition to the patient and its family. New Zealand also has a Palliative Care Strategy, which is aligned to the Cancer Control Strategy. The Ministry of Health and District Health Boards (DHBs) are working to implement actions identified by the Action Plan through a structured Cancer Control Work Programme focusing on several national projects related to: (1) Guidance to improve cancer care; (2) Integrating care for cancer patients (cancer networks); (3) Improving care provided to adolescents with cancer; (4) Improving palliative care; (5) Supporting workforce planning; (6) Reducing inequalities; and (7) Coordinating development of cancer data management. Nova Scotia and Ontario: Driving comprehensive, high quality cancer services, albeit with a differing focus In Nova Scotia and Ontario, the design of cancer control intervention shows similarities: First, both Canadian provincial jurisdictions have a specific cancer control body, Cancer Care Nova Scotia (CCNS) and Cancer Care Ontario (CCO), respectively. CCNS and CCO are mandated to advise the Health Ministry on cancer control issues as well as to ensure comprehensive high quality cancer control programs. However, both are not involved in the direct delivery of cancer control services. Second, both organizations must deal with a number of players (government, district health boards or local health integration networks, hospitals, specialized cancer centers, community groups, non-governmental organizations, universities etc.) in the planning and coordination of cancer services at the local, regional, and provincial levels. Third, neither Nova Scotia nor Ontario have articulated plans to adapt the CSCC for their provincial needs. Also, of interest to note is that both organizations are supporting provincial service delivery procedures organized via regional integrated cancer programs (District cancer programs in Nova Scotia and Regional cancer programs in Ontario). The major difference between these jurisdictions is their focus on initiatives to drive the quality of cancer services. CCO is embracing a system s level approach with investments and efforts directed at managing system performance; whereas CCNS is mostly involved in improving patient care through patient navigation and community outreach, including patient education and information. 39

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Nova Scotia: The design of cancer control intervention in Nova Scotia becomes evident when merging a number of documents and initiatives from the Cancer Care Nova Scotia (CCNS) Program in the Department of Health, including the 1996 Cancer Action Plan, a Report prepared by a Cancer Action Committee for the Deputy Minister of Health and the Appendix to contract for Commissioner for CCNS. 69 In the 1996 Report, the Cancer Action Committee made twenty recommendations. These recommendations are grouped and identified under eight priorities: (1) Create a governing organization to coordinate, strenghten and evaluate the cancer system in Nova Scotia; (2) Establish tumour groups to develop clinical practice guidelines and cancer treatment policies; (3) Strenghten the role of the family physician in cancer care coordination; (4) CCNS to collaborate with key players to improve services in the areas of prevention, screening, rehabilitation, supportive and palliative care; (5) CCNS to assume responsibility for a provincial drug formulary; (6) CCNS to foster a full spectrum of cancer research (from basic mechanisms of disease to behavioural and outcomes research); (7) CCNS to provide standards for and conduct cancer facilities/ program approval and review; and (8) CCNS to set up and provide operational support for a network that will promote the broad exchange of information among all groups and organizations involved in any aspect of cancer care. In addition to the creation of the CCNS Program in 1998, the most notable actions following these recommendations included: (1) the setting up of Cancer Site Teams (tumour groups) and of a CCNS surveillance and epidemiology unit; (2) the development, implementation, and evaluation of a Patient Navigation Program; (3) the publication of a Cancer District Program model; and (4) the building of a Cancer Patient Family Network. Ontario: Efforts to redesign Ontario s cancer control system began following the submission to the Ontario Government of the Cancer Services Implementation Committee Report in December The Committee recommended that an integrated cancer system be established and that Cancer Care Ontario be transformed into an evidence-based organization that would use data to plan, fund, and report on the overall performance of the cancer system. The subsequent assessment of the quality of cancer services in Ontario that was published as a book entitled Strengthening the Quality of Cancer Services in Ontario (2003), helped inform the development of the Ontario Cancer Plan and the organization of work within Cancer Care Ontario. Other CCO policy documents that contributed to the development of an integrated cancer system include Ontario s Cancer Prevention and Screening Action Plan (Cancer 2020), the Cancer Quality Council of Ontario s Four-point Strategy to reduce waiting times in Ontario, the Cancer Plan for the Greater Toronto Area (GTA 2014 Report) and, most recently, the Ontario Cancer Plan (2004), which is a provincial plan based on the input of 11 regional plans. The Ontario Cancer Plan incorporates the Cancer 2020 Action Plan and the Aboriginal Cancer Strategy. The Ontario Cancer Plan has six priorities relating to: (1) expanding the use of provincial standards and evidence-based guidelines to the delivery of cancer services; (2) implementing regional cancer programs; (3) reducing demand for cancer services through the implementation of the Cancer 2020 plan and by increasing capacity and resources; (4) developing rapid access strategies; (5) investing in performance measurement and accountability, and (6) coordinating cancer research efforts across Ontario. 69 The Appendix to contract for Commissioner was referred to by the former Commissioner as the strategic plan for cancer control in Nova Scotia and continues to function as the manifesto for cancer control in Nova Scotia. Personnal communication, Dr. Andrew Padmos, CCNS former Commissioner, November 10, 2006 letter. 40

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5.2 COMMONALITIES AND DIFFERENCES IN DESIGN The goals and priorities for cancer control Explicit statements regarding goals and priorities in cancer control for each jurisdiction can be found under different key words such as goal, purpose, aim, outcome goal, or priority goal. Regardless of the terminology used, each jurisdiction has a set of planned actions, which can be viewed as a framework comprising: stated goals priorities, objectives intended action items (see Appendix 5A for a description of the goals and priorities of each jurisdiction s main strategies, programs and actions plans). Stated goals and priorities are either expressed as actions to be carried out to resolve problems currently faced (e.g. to improve the quality of care) and/or to articulate the optimal state of affairs as a result of planned actions (e.g. to reduce health inequalities). 70 Whereas goals express the most desirable outcome, priorities are a selection of the most necessary actions to be taken while acknowledging the jurisdiction s actual policy and socio-economic context. When deciding on priorities, a number of aspects are considered such as the current health policy priorities, the values of the governing organization, the health gains associated with different goals and actions, and availability of resources (including people, finance, facilities, techniques, methods, among others). 71 As summarized in Table 4, the goals and priority statements cover different domains of cancer control such as improving health outcomes, reducing inequalities, service quality improvement, better effectiveness in service delivery, enhancement of research, securing of resources (human, equipement, etc.), patient empowerment as well as the importance of strenghtening governance underlying the cancer system. Our review indicates that all jurisdictions have stated goals regarding the improvement of health outcomes, namely the reduction of cancer mortality. Only France and England have not included the reduction of cancer incidence as an explicit goal. The aim of improving the quality of life of cancer patients and their families is also stated explicitely by more than half of the selected jurisdictions. Reducing health inequalites with respect to cancer among specific groups is a central aim in England and in New Zealand. In most other jurisdictions, the focus is on improving access to care for all. In British Columbia, the issue of access is specific to the Northern Region. In England, New Zealand, and Ontario, it is timely access (as in reducing waiting time) that is a central goal orientation. 70 Hence, if one goal statement is not represented in a specific jurisdiction, it is either because there is no such problem, the problematic situation has been resolved, the priority was put somewhere else or it is reflected at a lower level in the design framework for planned actions. The current overview is focused on the content and domains reflected at the highest level of direction setting- the goals and priorities. For a detailed description of goals, priorities, and associated objectives and action by jurisdictions, refer to Appendix 5A. 71 As explained in the DCPC-CCPC and WHO-NCCP frameworks. 41

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Table 4. Stated goals and priorities for cancer control intervention by jurisdictions Alberta British Columbia Canada England France New Zealand Nova Scotia Ontario Domain 1: Improving health outcomes Reduce cancer incidence Reduce cancer mortality Reduce cancer morbidity/severity of illness Improve well-being/quality of life (patients and families) Improve survival Domain 2: Reducing inequalities and/or improving access to care Reduce health inequalities among specific groups Improve access to services for socially disadvantaged groups or specific populations Improve access to quality care for all Establish timely access for cancer services Domain 3: Improving quality of service provided Develop health promotion and primary prevention Develop/organize screening Improve diagnosis Improve treatment (drugs/radiotherapy, etc.) Develop/improve psychosocial, supportive, rehabilitative and palliative care Rebalance/integrate/strenghten cancer control efforts across the spectrum: from prevention to palliation Develop standards and guidelines Ensure compliance with evidence-based practice Establish multidisciplinary care Ensure innovation in cancer activities/services Domain 4: Ensuring integration/coordination and effectiveness of service delivery Improving cancer services in the community Develop central role for family physicians/navigators Develop networks/ regional cancer programs 42

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Ensure patient-centered care Process improvement projects Domain 5: Research and surveillance Ensure/develop/enhance/coordinate cancer research Improve knowledge of cancer through surveillance Develop cancer registry Domain 6: Enhancing resources (human, facilities) Cancer workforce attraction/retention Health professional training/education Capital equipment acquisition/inprovement Create new facilities Domain 7: Empowerment Empower patients and families regarding their care Promote active involvement of consumer representatives in cancer control Create a well-informed patient and population Domain 8: Cancer system governance and efficiency Information management/improving measurement Evaluation focusing on outcomes Ensure accountability in all services/activities Ensure through cooperative action, excellence in cancer care, research, education, and system management Link goals, plans, strategies across governments/health regions/organizations Support health care partners with the implementation of cancer control programs Manage drug costs Note: The goals and priorities identified by an pertain to those identified at the highest levels of the jurisdiction s goal orientation statements in available published documents ending in 2006 and hence do not reflect a complete factual description of each jurisdiction s integral strategy or program components. If one goal or priority is not represented in a specific jurisdiction, it is either because : (1) we could not find such goal or priority stated at the highest levels in available published documents; (2) such goal or priority is stated at a lower level in the strategy or action plan framework; or (3) it is not applicable because there is no such problem or the problematic situation has been resolved. The range of goal and priority statements (lefthand side of the table) used for comparative analysis is intended to capture the diversity, and to minimize redundancy, without compromising the intended meaning of the actual statements found in each jurisdiction. See Appendix 5A for specific wording of goals and priorities, and for details about the associated objectives and actions. 43

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Across the jurisdictions, we also observed that the goal statements also make reference to the spectrum of cancer control services and to supporting elements such as education, research, and human resources. This is particularly evident in Alberta, British Columbia, England, New Zealand, and Nova Scotia. When not expressed at the level of goals, these domains are well represented in priority statements. The priority given to improving primary prevention emerged as a strong trend, which is not surprising given the generalized goal of reducing cancer incidence. Also noteworthy is attention given to patient information, education and empowerment by Alberta, England, France, New Zealand, and Nova Scotia. These priorities underscore the importance of promoting the active participation of patients regarding their care Values, guiding principle and key concepts Values represent the deeply held beliefs about the qualities considered worthwhile or desirable, and can operate at the level of individuals, institutions, and society. 72 Whether expressed by the organization or within a policy document, values are a crucial part of cancer control intervention design as they shape the intervention s main directions and associated actions. This component of design is understood broadly to include guiding principles and key concepts. In fact, values may also be expressed as guiding principles that more concretely provide guidance to how the organization will act. Key concepts can also be considered values since they reflect specific approaches advocated in the cancer control literature-namely, the population-health approach; patient-centered care; evidence-based care; integrated care; and knowledge translation (see Figure 2 below for definitions of these concepts). Values, guiding principles, and key concepts can be expressed explicitely or can be inferred from descriptions of actions, specific approaches or directions in cancer control programs or strategic plans. Table 5 compares jurisdictions according to a number of values, principles and concepts endorsed by the jurisdictions (see shaded boxes in Appendix 5B for a detailed description of values articulated by each jurisdiction). A first notable observation is a core set of values shared by most jurisdictions; namely- 1. Collaboration/cooperation among different actors/sectors 2. Efficient and responsible use of resources 3. Equity/equitable access/accessibility 4. Evidence-based approach to health care 5. Integration across diseases, services/activities 6. Patient-centered care approach 7. Performance-oriented/outcome-focused 8. Population-based approach to health planning and interventions The value of equity was mostly linked to reducing health inequalities, but in some cases was associated with guaranteeing access to health care closer to where individuals live (Alberta), guaranteeing standards for access and quality of care (British Columbia), and ensuring fairness across regions (Ontario). The value of integration made reference to integrating activities across chronic diseases (Alberta), integrating services across levels of care (British Columbia) or both 72 Schwartz (1993, p. 155), cited in Giacomini M, Hurley J, Gold I, Smith P, Abelson J. Values in Canadian Health Policy Analysis: What are we taking about? Canadian Health Services research Foundation report, October 2001 p

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Table 5. Values and principles guiding cancer control intervention by jurisdictions Values and guiding principles Alberta British Canada England France New Nova Ontario Columbia Zealand Scotia Accountability/responsibility/reliability Caregivers support/education Collaboration/cooperation/partnerships/consultation Comprehensiveness of cancer control implicit Consumer/user involvement Implicit Coordination/continuity Implicit Courage Display leadership/action oriented/active engagement implicit Efficient/responsible use of resources Equity/equitable access/accessibility Implicit Implicit Evidence-based (scientific rigour/expertise) Humanism and Compassion Integration (across diseases, services/activities) Implicit Integrity Optimism/hope Patient-centered care (respect/support) Implicit Implicit Performance-oriented/outcome-focused/excellence Population health-based Implicit Implicit Implicit Precautionary principle Research/knowledge translation/innovation driven Respect for cultural diversity Implicit Respectful of jurisdictions/regions Implicit Sustainability/human resources Implicit Technology driven Timeliness Transparency Note: When a value is not marked by a, it was not explicitly stated in either published cancer control programs or strategic plans for cancer control. For a value to be marked as implicit, it had to be identified through descriptions of specific approaches or actions, or statements of vision, directions or organisational principles in cancer control programs or strategic plans. Appendix 5B entitled Values and Guiding Principles by Jurisdictions provide information regarding specific wording and distinction between explicit and implicit findings. Grey shaded lines represent the values and principles that are shared by most jurisdictions. 45

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(New Zealand). For the remaining jurisdictions, the value of integration referred to the organizational, professional, and clinical levels (e.g., Nova Scotia, in providing continuity and coherence in the process of care delivery). Also worthy of interest is the place given to research and knowledge tranfer as the foundation of cancer control activities in Alberta, British Columbia, Canada, and France. Figure 2. Key concepts definitions Evidence-based health care/policy: The consistent use of scientific evidence to guide clinical practice 73 as well as decision-making within health care settings. 74 Policy makers, managers, and clinicians view evidence as an important lever that ensures health care practice is more effective, thereby representing value for money. 75,76 Health system integration: An approach that underscores the coming together of all elements related to delivering care, including the alignment and collaboration between health institutions and health care providers, as well as the connectedness among services. 77 Integrated delivery system theory suggests that there are three dimensions of health system integration, and these dimensions develop at different times as a system matures. 78 At the clinical level, integration occurs by providing continuity, cooperation, and coherence in the process of care delivery 79 ; At the professional level, integration refers to the extent to which physicians depend economically on the system, use the sytem s services and facilities, and actively participate in its planning, management, and governance. At the functional level, integration refers to the coordination of key administrative support functions and activities, such as planning, information systems, and financial management. Clinical integration extends both horizontally and vertically. 80 Horizontal integration constitutes the coordination of patient care services across care sites that are at the same stage of services delivery. Horizontal integration is often operationalized when two acute care hospitals merge or share clinical services. Vertical integration refers to the coordination of patient care activities across care sites that are at different stages of service delivery, such as coordinating services 73 Sackett D, Rosenberg W, Gray M, Haynes B, Richardson S. Evidence based medicine: What it is and what it isn’t. BMJ 1996;312: Denis JL., & Langley, A. Forum: Introduction. Health Care Management Review, 2002;27(3): Dopson S, Fitzgerald L, Ferlie E, Gabbay J, Locock L. No magic targets! Changing clinical practice to become more evidence based. Health Care Management Review 2002; 27(3): Champagne F, Lemieux-Charles L, Mcguire W. Introduction: Towards a broader understanding of the use of knowledge and evidence in health care. In: Lemieux-Charles L, Champagne F, editors.using Knowledge And Evidence In Health Care: Multidisciplinary Perspectives. Toronto: University of Toronto Press, 2004: Lloyd J, Wait S. Integrated care: A guide for policymakers. International Longevity Center & Alliance for Health and the Future, Report from a workshop on Integrated Care, European Social Network Conference, July 5 th 2005, Edinburgh. Available at: %20A%20Guide%20for%20Policymakers.pdf 78 Shortell SM, Gillies RR, Anderson DA, Mitchell JB, Morgan KL. Creating organized delivery systems: The barriers and facilitators. Hospital and Health Services Administration, 1993;38(4): ; Shortell SM, Gillies RR, Anderson DA, Morgan EK, Mitchell JB. Remaking Health Care in America: Building Organized Delivery Systems. San Francisco: Jossey- Bass, 1996; Conrad DA. Coordinating patient care services in regional health systems: the challenge of clinical integration. Hospital & Health Services Administration, 1993;38(4): Crabtree Tonges M. Clinical integration in organized delivery system. Responding to new challenges in health care. Chapter one pp In: Crabtree Tonges M (Ed.) Clinical Integration. Strategies and practices for organized delivery systems, Jossey-Bass Publishers, San Francisco, Conrad DA. Coordinating patient care services in regional health systems: the challenge of clinical integration. Hospital & Health Services Administration, 1993;38(4):

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among primary care, hospital and home care providers. The creation of integrated healthcare networks to manage the health problems of a population is an example of vertical integration. Knowledge transfer/translation: A spectrum of activities occuring between the creation of new knowledge and the application of such knowledge into practice for the purpose of yielding beneficial outcomes for society. 81,82 Applied in the context of cancer control, it makes reference to the uptake of well-researched and tested interventions in cancer prevention and care to inform best practices and decision-making regarding the next course of action. 83 The process of utilizing the research knowledge is complex and may involve attention to factors that influence the link between knowledge and evidence, and their use for decision-making in health care 84, 85 settings. Patient-centered care: An approach that consciously adopts the patient s perspective, 86 which may have several implications such as: (1) care providers acknowledging not only the disease, but also the patient s illness experience 87 ; (2) care is delivered to patients in a manner that is respectful of, and responsive to, individual patient preferences, needs, and values 88 ; and (3) care is organized in a way that emphasizes the patient as being the locus of control, and that the experience of such care is seamless across environments-namely, the hospital setting, patient s home, work place, and community. 89 Population-health based approach: 90,91 An approach that focuses on the interrelated conditions and factors that influence the health of populations over the life course, identifies systematic variations in their patterns of occurrence, and applies the resulting knowledge to develop and implement policies and actions to improve the health and well-being of those populations. This extends beyond responding to diseases and treating those who are sick to focusing on the health of the population as a whole and sub-groups within the population. The overarching goals of a population-based approach to health policy are to maintain and improve the health status of the entire population as well as to reduce health inequalities between specific populations groups. 81 Innovation in action: Knowledge translation strategy. Canadian Institute for Health Research Report, Ottawa, ON, 2004, p Birdsell JM, Atkinson-Grosjean K., Landry R. Knowledge translation in two new programs: Achieving the Pasteur effect. Canadian Institute of Health Research, See p in: Advisory Committee on Cancer Control, National Cancer Institute of Canada. Canadian Medical Association Journal, 1994;151(8): See pp in Champagne F, Lemieux-Charles L, Mcguire W. Introduction: Towards a broader understanding of the use of knowledge and evidence in health care. In: Lemieux-Charles L, Champagne F, editors.using Knowledge And Evidence In Health Care: Multidisciplinary Perspectives. Toronto: University of Toronto Press, 2004: Lomas, J. Postscript : Understanding evidence-based decision-making- or, why keyboards are irrational. In: Lemieux-Charles L, Champagne F, editors.using Knowledge And Evidence In Health Care: Multidisciplinary Perspectives. Toronto: University of Toronto Press, 2004: Gerteis et al (eds). Through the Patient s eyes, 1993, p Stewart M, Brown JB, Weston WW, McWhinney IR, McWilliam C, Freeman TR. Patient-centered Medicine: Transforming the clinical method. Radcliffe Medical Press Second Edition, Institute of Medicine. Crossing the quality chasm, 2001 p See p. 20 in Perlin, JB, Kolodner RM, Roswell RH. The Veterans Health Administration: Quality, value, accountability, and information as transforming strategies for patient-centered care. Healthcare Papers, 2005;5: Federal, Provincial, Territorial Advisory Committee on Population Health, Cited in : The population health template. Key elements and actions that define a population health approach. July 2001 draft, Health Canada, p Measuring the impact of asthma on the quality of life in the Australian population. Australian Institute of Health and Welfare, Australian government. December 2004, p

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5.2.3 The spectrum of cancer services The spectrum of cancer services refers to the care continuum that spans prevention, screening, diagnosis and treatment (systemic therapy, radiotherapy, surgery), supportive care and palliative care. The cancer care continuum may also include continuing care, home care, pain management, and bereavement support. 92,93 Figure 3. The cancer care continuum 94 Although cancer research, education, and surveillance are often considered as part of a comprehensive approach to cancer control, they are not included here as this section focuses on cancer service delivery. Highlights of each jurisdiction s main policies, commitments and/or programs in place for each component of the cancer services continuum is presented in the following paragraphs. A more detailed description is to be found in shaded boxes inserted below in the text. Our review indicates that while all cancer control programs and action plans cover cancer diagnosis and treatment, the emphasis on prevention, screening and on supportive and palliative care is more variable. The Canadian Strategy for Cancer Control, however, purposely seeks to rebalance the focus by putting a strong commitment toward primary prevention as well as supportive and palliative care. In most jurisdictions, the prevention initiatives are under the responsibility of the Ministry or Department of health and the focus is on tobacco control. With the law recently announced in France 95 and the public smoking ban to take effect in 2008 in 92 Institute of Medicine (1999) Ensuring quality cancer care, p. 22. Mandelblatt J, Yabroff KR, Kerner J. Equitable access to cancer services. A review of barriers to quality of care. Cancer vol. 86, no 11, pp Fountain M & Aull R. Cancer Care In the Next Millennium. The Academy Journal, 1999, vol. 2, p Interdiction de fumer dans les lieux publics à partir du 1er février October 9, 2006 Press release available on the INCa website. 48

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British Columbia, 96 all jurisdictions now have laws that prohibit smoking in enclosed public places. Organized 97 cancer screening programs vary in scope and in number, the smallest common denominator being the establishment of a breast screening program. While BC s breast and cervical programs are the oldest, England is the only one to have secured in place a program for colorectal screening. All other jurisdictions are considering it. Diagnosis and treatment are central components of the cancer control spectrum in all jurisdictions; albeit with differences in priorities for development. British Columbia has well developed programs in terms of production and dissemination of clinical practice guidelines, coordination of surgical oncology, and management of access (and waiting time) to radiotherapy. While cancer services organization reform is no longer a priority for BCCA (but cancer services organization and delivery is a key direction of its strategic plan), it is an important one in England, France, New Zealand, Nova Scotia, and Ontario. A second significant focus across most jurisdictions is the production and dissemination of clinical practice guidelines to improve service quality. Supportive care addresses psychological, spiritual, social, practical, and information needs of cancer patients and their families. It is a cross-cutting component given that care needs may span the whole continuum, beginning with the early detection phase. That may explain why it is sometimes considered together with rehabilitation and palliative care. However, for the purpose of planning services, it stands as one distinct component in most jurisdictions studied. One good example of supportive care is the Patient Navigation program in Nova Scotia. All jurisdictions are putting significant emphasis on palliative care. In Alberta, palliative care is well developed in one region. In fact, one goal of the Alberta Cancer Control Action Plan is to establish a provincial framework for the integration and access to supportive and palliative care. In England and Ontario, substantial investment was committed to palliative care. 98 In France and New Zealand, the challenge is to drive forward the implementation of existing national policies on palliative care. 96 B.C. to tighten smoking restrictions. Canadian Press, November 4, Available at: 97 Organized screening has important quality advantages over unorganized screening: predictable and thorough recruitment, patient recall and follow-up by way of a central registry, ongoing quality assurance, and quality control and evaluation. Definition taken form Ontario Cancer system quality Index at:

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Spectrum of cancer services — Alberta Prevention: Alberta Health and Wellness: Reducing Tobacco Use in Alberta: A Comprehensive Strategy (2002) Alberta Health and Wellness: Alberta Smoke-free Places Act (2005), where indoor smoking is however only prohibited in places where children are allowed. Alberta Cancer Control Action Plan (ACCAP) includes priority to support the implementation of a province-wide system for integrated chronic disease prevention and health promotion through the Alberta Healthy Living Network Alberta Cancer Board (ACB) and Foundation: Sunright program. Three-year pilot sun safety campaign ( ) ACB Prevention program within its Division of population health and information ACB plans to increase its provincial capacity to deliver primary care prevention by supporting the implementation of a province-wide System for Integrated Chronic Disease Prevention through the Alberta Healthy Living Network 99,100 Screening: Alberta Cancer Board (ACB): Screen Test (program for the early detection of breast cancer, in operation since 1990) Alberta Health and Wellness: Organized provincial cervical screening program, announced in 2000, initiated in 2004 and coordinated by ACB Alberta Health and Wellness: Organized provincial breast screening program, announced in 2000 and 2004, to be implemented in 2007 and to be coordinated by ACB ACB to assess feasibility of an organized provincial colorectal screening program Diagnosis and treatments: Diagnostic and treatment services provided through the ACB provincial cancer program ACB business plan includes priority to reduce wait times for diagnosis and treatment ACB business plan includes priority to improve cancer surgery coordination and practice ACB business plan includes priority to strenghten provincial process for approval, management and evaluation of cancer drugs, as well as to obtain lowest possible cancer drug purchase price ACB: Tumour group council (6 cancer sites) Supportive care: ACB: Services provided through the Psychosocial Oncology Network 101 include individual and family counseling, group programs, and educational supports to cancer patients and their families. The Network extends services to the Regional Cancer Centers, the Associate Cancer Centers, and the Community Cancer Centers. ACCAP includes goal to establish a provincial framework for the integration and access to psychosocial, supportive, rehabilitation and palliative care ACB Pain and palliative care teams: plan to develop a provincial Patient Navigation System. 102, ACCAP (2004) 100 ACB Business Plan ACB. Medical Affairs and Community Oncology. What is psychosocial oncology? ACB Business Plan Special projects. 50

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Palliative care: Capital Health Region-Community Care Services: Regional palliative care program (in Edmonton since 1995) Calgary Health Region: Regional palliative care program ACB: Palliative Care Network Initiative, established in 1998 and renamed the Hospice Palliative Care Network in The Hospice Palliative Care Network works with RHAs and other key stakeholders to ensure that all patients across the province have access to quality hospice palliative care no matter where they live. 104 Another important role of the Network is to ensure seamless palliative care service delivery between communities and the ACB s Tertiary Cancer Centers. 105 Spectrum of cancer services — British Columbia Prevention: British Columbia: Tobacco Control Act (2006, to be implemented in 2008) British Columbia: ActNow BC (healthy living strategy, 2005) British Columbia: Targeting our efforts (tobacco control strategy, 2004) Canadian Cancer Society – BC /Yukon Division: Prevention Strategy (2003) BCCA: prevention program created in Activities are mostly geared toward the youth. Recent initiative includes the recruitment of community prevention coordinators to create supportive environments for cancer prevention in communities (2006) BCCA and BC Provincial Medical Genetics Program: Hereditary cancer program Screening: BCCA: Organized cervical cancer screening program (since 1949) BCCA: Screening mammography program of BC (organized program since 1988) BCCA: Submitted proposals for provincial colorectal screening and provincial cervical screening/human papilloma virus screening Diagnosis and treatments: Diagnostic and treatment services and cancer management guidelines provided through the BCCA provincial cancer program. Radiotherapy only provided in BCCA s regional cancer centers. Chemotherapy provided in BCCA centers as well as in the Communities Oncology Network. BCCA and Vancouver Island Health Authority: TeleCare program Surgical Oncology Network (since 2001) Family Practice Oncology Network Pediatric Hematology Oncology Network (with BC Children s Hospital) Oral Oncology Network Nursing Oncology Network A Breast Cancer Surgical Center will be developed to improve access to diagnostic and treatment services. It is expected that tissue collection will enhance research in breast cancer. 106 Provincial tumour Groups 104 ACB. What is hospice palliative care? ACB. Business Plan 2002/03 to 2004/ PHSA. (April 2003). Health service design plan. From vision to reality

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Supportive care: BCCA: A Provincial Oncology Nutrition Network 107 coordinates functions and ensures consistency of care related to oncology nutrition across all BCCA centers. The Network includes registered dietitians from all BC Cancer Centers BCCA: A Provincial Cancer Rehabilitation Network 108 coordinates regional cancer centre activities for patient and family counseling, psychiatry, and nutrition services. The Network also works with host hospitals to provide speech pathology and physiotherapy services. BCCA: The Psychosocial Oncology Network, still under development, 109 is a provincial network of health care practitioners and health care organizations under BCCA. Its mandate will be to coordinate psychosocial activities based in the community. 110 BCCA: Two Patient Navigation Programs are available to patients- one for newly diagnosed patients with breast cancer situated in the Breast Health Center 111 and the second in a rural region assisting patients with all tumour sites. 112 Palliative care: BC Ministry of Health: A provincial framework for end-of-life care (2006) There is a Palliative Care/End of Life Care Network, composed of BCCA, Regional Health Authorities, hospices and palliative care units. The Network links with the CSCC BC and Yukon Palliative/End of Life Strategy. It has promulgated best practices, standards and guidelines, minimum data sets, etc. 113 BCCA: Each of BCCA s regional cancer center has a symptom management and palliative care team to assist patients and families who are having problems with their symptoms or dealing with the knowledge that their cancer is not curable. For example: BCCA: Palliative Care and Symptom Control Network since ,115,116 Palliative care mostly happens in the community. BCCA helps link patients with care providers in their home area. BCCA: Pain and symptom management/palliative care Program at the Center for Southern Interior. Spectrum of cancer services — Canada Prevention: Tobacco Law 1997, ch. 13. Health Canada: The federal tobacco contol stategy. A framework for action (2001) Public Health Agency of Canada (PHAC): The integrated pan-canadian healthy living strategy (2005) Canadian Strategy for Cancer Control (CSCC) includes priority on primary prevention which aims to establish a Canada-wide primary prevention system that supports evidence-based practice for policies 107 BCCA. Oncology Nurtrition Network BCCA Sociobehavioural Oncology Connections. Winter 2006 (issue 4) Sociobehavioural Oncology Connections, Winter 2006 (issue 4). Mapping our Future: Psychosocial Oncology at the 2005 BCCA Annual Cancer Conference. 110 Personal communication with Richard Doll, July 7, BCCA (2005). Helping patients navigate the cancer system. Sociobehavioural Oncology Connections. (Spring). 112 BCCA (2004). What is a patient navigator? Surgical Oncology Network (Spring) Personnal communication, Dr. Simon Sutcliffe, President, BCCA, January 29, 2007 letter. 114 BCCA (2005). Strategic Plan. 115 PHAS. Three years of progress. April McKensie MR. BC Network to improve palliative care. CMAJ, 1995, 152;(9):

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and programs and addresses the population-based risk factors for cancer (e.g. develop national sun safety program; develop national environmental and occupational exposure program, etc.) Screening: PHAC, Center for Chronic Disease Prevention and Control (CCDPC), Cancer program: This program hosts many activities including a Cervical Cancer Prevention Network, and the Canadian Breast Cancer Initiative, which includes an initiative to promote the development of organized quality screening programs and the development and use of a national database. Diagnosis and treatments: No health services are provided to the population as this is of provincial jurisdiction. PHAC, CCDPC, Cancer program: Canadian Breast Cancer Initiative includes breast cancer communication tools for physicians and patients, as well as clinical and practice guidelines for the care and treatment of breast cancer. Canadian Strategy for Cancer Control (CSCC) inludes priority on clinical practice guidelines and on standards. Supportive care: PHAC, CCDPC, Cancer program: Canadian Breast Cancer Initiative includes Information Exchange Pilot Projects. It also published a study investigating and assessing the navigator role in meeting the needs of women with breast cancer (2002). Canadian Strategy for Cancer Control (CSCC) includes priority to rebalance the focus that seeks to ensure that patients needs are better served by Canada s health care system. Palliative care: Health Canada Secretariat on Palliative and End-of-life Care: Several activities conducted toward the development of a Canadian Strategy on Palliative and End-of-life Care by a coordinating committee and working groups ( ), including a five-year action plan (2002). Spectrum of cancer services — England Prevention: Department of Health (DH): Smoking Kills (UK tobacco control strategy, 1998) DH: Choosing health: making healthier choices easier (2004) Government: Health Bill passed in 2006 (banning smoking in all enclosed places for 2007) NHS Cancer Plan includes priority on primary prevention, namely to set national and local targets to reduce smoking in disadvantaged groups. NHS: Cessation programmes and nicotine replacement therapy Screening: National Health Service (NHS) screening programs: Organized breast screening program (1988) NHS: Organized cervical screening program (1988) NHS: Organized bowel cancer screening program based on FOBT (2006) NHS: National prostate cancer risk management program (not organized but informed choice) NHS Cancer Plan includes priority on improving screening, namely to tackle inequalitites in cervical screening 53

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Diagnosis and treatments: Most services are provided through 34 Cancer Sevices Networks, with primary care having a central role NHS Cancer Plan includes priority on cutting waiting times for diagnosis and treatment NHS Cancer Plan includes priority on improving treatment, namely that care for all patients to be reviewed by specialist teams NICE: appraisal of cancer drugs and extension of Improving Outcomes guidance for all cancers Supportive care: NHS Cancer Plan includes priority on improving care; namely- to develop a new supportive care strategy NICE: Guidance on supportive and palliative care for adults with cancer (2004) The NHS Integrated Cancer Care Program, launched in 2004, is intended to develop and deliver a model to help patients better navigate the health system, specifically the transition from primary to secondary care, and to empower them to make decisions that suit their personal circumstances. 117 Palliative care: NHS Cancer Plan includes priority on improving cancer services in the community, namely to invest on training of district palliative care nurses DH: 50 million invested in 2004 for hospices and to improve access to specialist palliative care NHS: End-of-life Care Program (2004) DH: End of life care strategy in preparation (announced in 2006) Spectrum of cancer services — France Prevention: Government: Décret du 15 novembre 2006 modifiant la Loi Evin (tobacco control legislation, 1991) prohibiting smoking in indoor public places to be implemented in 2007 Government: public consultation on banning smoking in enclosed public places (2006) Institut national de prévention et d éducation pour la santé (INPES): programs for education and smoking cessation Cancer Plan includes a priority to develop a comprehensive anti-smoking strategy Screening: Ministry of Health (MH): Organized breast cancer screening (since 1988). The Cancer Plan includes a priority to generalize systematic breast cancer screening by end of Program managed at national level by INCa, at regional levels by DRASS MH: Organized cervical screening in 5 health departments but nationwide generalisation not planned. Cancer Plan includes a priority to encourage individual non-compulsory screening for cervical cancer MH: Organized Colorectal cancer screening announced in 2006 to be generalized in Cancer Plan includes a priority to facilitate development of nation-wide colon cancer screening 117 The NHS Cancer Plan and the New NHS. Providing a patient-centred service (2004). dguidancearticle/fs/en?content_id= &chk=2ogu1i 54

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Diagnosis and treatments: Cancer Plan includes a priority to ensure there is systematic coordination of all players through the establishment of Regional cancer Networks and through the grading of health care institutions Cancer Plan includes a measure ensuring that all new cancer patient to benefit from multidisciplionary input into their case and benefit from a customized care program Cancer Plan includes a measure providing patients with improved breaking the bad news consultation Cancer Plan includes a measure facilitating at-home chemotherapy and more generally at-home care Supportive care: Cancer Plan includes a measure to increase the availability to patients of supportive care Cancer Plan includes measures to improve the mechanisms allowing patients to retain their jobs, to recover their jobs, and to take leave to support a friend or relative Cancer Plan includes measures encouraging patients and user groups to participate in hospital life by defining the scope of such paticipation Palliative care: Integrated in hospital mission since 1991 Law of June 9 th, 1999 that stipulates and organises palliative care as to ensure access to palliative care services. Three-year action plan ( ) to improive service implementation Cancer Plan includes a measure to support the national program to develop palliative care Spectrum of cancer services — New Zealand Prevention: Ministry of Health (MH): Clearing the Smoke. A five-year plan for tobacco control in NZ MH: Smoke-free Environments Amendment Act (2003) NZ Cancer Control Action Plan (NZCCAP) priority includes implementation of Healthy Eating- Healthy Action Screening: MH-National Screening Unit (NSU): BreastScreen Aotearoa (national organized breast screening program since 1998) MH-NSU: National cervical screening program since 1991 MH-NSU: Policy work undertaken on colorectral screening ( ) NZCCAP priority includes the improvement of coverage for BreastScreen program Diagnosis and treatments: Diagnostic and treatment (radiotherapy and systemic therapy) services mostly provided through 6 regional cancer centers NZCCAP priority includes the establishment of Regional Cancer Networks NZCCAP priority includes establishments of standards for timely access to services Supportive care: 55

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NZCCAC priority includes the establishment of integrated programs of supportive care and rehabilitation with defined leadership Palliative care: MH: NZ Palliative Care Strategy (2001) NZCCAC priority includes the implementation of the Palliative Care Strategy Spectrum of cancer services — Nova Scotia Prevention: Department of Health Promotion and Prevention (DHPP, since 2006): A comprehensive tobacco control strategy for Nova Scotia (2001) DHPP and partners: Chronic disease prevention strategy (2003) DHPP: Smoke-Free Places Act (2002). A new amendment in 2006 bans smoking in all indoor public places, workplaces, and at outdoor eating and drinking establishments. 118 Canadian Cancer Society – NS division and CCNS: Action in your Community against Tobacco Program. This initiative directly supports the community development component of the provincial Tobacco Control Strategy. 119 Screening: DH: Nova Scotia breast screening program (since 1991) CCNS: Cervical cancer prevention program (DH 1991, integrated to CCNS in 2002) Districts, CCNS and partners: consensus reached for developing an organized colorectal screening program (2003), albeit it has not yet been implemented Diagnosis and treatments: Diagnostic and treatment services provided through cancer care programs at two specialized centers CCNS and District Health Boards: District Cancer Programs in development CCNS: A Provincial Surgical Oncology Network, established in 2001, is a forum for surgeons across the province that focuses on guideline development and exchange of information about advances in the surgical treatment of cancer and research. Activities thus far have mainly focused on conducting annual educational events (e.g., Sentinal Node Biopsy in 2005 and Thyroid Cancer in 2006). 120,121 CCNS: Thirteen Cancer Site Teams mandated to develop cancer management guidelines Nova Scotia telehealth network: one of its clinical program is oncology Supportive care: CCNS: Breast cancer link program (since 2001) CCNS: Patient navigation program (since 2001) CCNS: Patient Navigation Community Liaison (since 2002) 118 CCNS newsletter, January ACT 2005 Formative evaluation: Shedding light on community capacity. Stylus Consulting Inc. for the ACT Initiative 120 CCNS. Report to community Personal communication with Jill Petrella at CCNS 56

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CCNS: The Cancer Patient Family Network, established in 2001, is as a formal venue for providing support and information to cancer patients, survivors, and family members. 122 Palliative care: DH: Continuing Care Strategy (2006) includes an announcement to develop a palliative care program Queen Elizabeth II Palliative Care program CCNS: Palliative care front-line education program (2003, education) CCNS and others: Working toward implementing palliative and supportive care as a core service of the DH, which would require every district to meet defined standards and have a core palliative care team. Spectrum of cancer control services — Ontario Prevention: Ministry of Health Promotion (MHP): Comprehensive tobacco control strategy (2006) MHP: Smoke-Free Ontario Act, prohibiting smoking in all enclosed workplaces and enclosed public places in Ontario as of May 31, 2006 (replaces the 1994 Tobacco Control Act) MHP: Ontario s Action plan for healthy eating and active living (2006) CCO and Canadian Cancer Society: Cancer 2020 Action Plan (2003) CCO s Aboriginal Cancer Unit: Aboriginal Tobacco Strategy Screening: CCO: Ontario Breast Screening Program (since 1990). Organized breast screening program for women 50 years and over, operated by CCO and funded by MOHLTC. CCO: Ontario Cervical Screening Program (since 2000). Organized cervical screening program, operated by CCO and funded by MOHLTC. CCO: Plans to set up an organized colorectal screening program using FOBT Diagnosis and treatments: Chemotherapy and cancer surgery are offered in many hospitals throughout Ontario. Radiation therapy is available only at Regional Cancer Centers CCO: Surgical oncology program (since 1998) CCO: The New Drug Funding Program funds most of the newer anti-cancer drugs. The formulary is one aspect of that program. CCO: Clinical practice guidelines and standards development led by the Program in Evidence Based Care (see Ontario s distinctive feature in Chapter 7 and Appendix 7A for details) Supportive care: Regional Cancer Centers: integration and coordination of supportive care services now devolved to the regional cancer programs Palliative care: Ministry of Health and Long Term Care (MHLTC): Ontario End-of-life Care Strategy (since 2005). CCO has an initiative called the Palliative Care Integration Project which is pushing out tools and standards to improve the quality of palliative care across the province. By the end of 2006, CCO will 122 CCNS. Cancer Patient Family Network. pdf 57

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have regional improvement coordinators working to implement these tools and standards across the province. The initial work will focus on lung cancer patients Organizational architecture of cancer care services As defined in our integrated framework, the organizational architecture of cancer care services refers to the particular configuration through which these services are organized and delivered. The cancer care configurations that we examined pertain to the provision of care to cancer patients. Therefore, they do not focus on the organization of health promotion, prevention, and screening programs. Our review 124 suggests that the design of organizational architecture of cancer care services is informed by the following characteristics: 1. Adoption of the regionalization of their cancer care services. 2. Development of a hierarchy of services, defining facilities and professionals that will be authorized to provide different types and levels of care. 3. Aim to improve the integration of cancer services to ensure coordination and continuity of care between the primary, secondary and tertiary care levels, across health care facilities, and between the curative, supportive, and palliative care interfaces. Shaped by the above organizing characteristics (or principles), configurations of cancer care delivery take on the general form of regional cancer programs or networks. In contrast to silos of professionals and facilities, such configurations formally recognize collaborative links among care providers and deliberately employ a structure to facilitate the coordination of services across providers at primary, secondary, and tertiary levels, as well as work together to ensure that services are planned and delivered in line with clearly defined national/provincial standards. These regional cancer programs and networks generally seek to: Provide equitable access to a common core of cancer services throughout the jurisdiction (for all geographical areas covered by the network or program) Improve the quality of care by reducing fragmentation and variations in care Provide care closer to home, while fostering formal referral patterns and communication channels between service providers 123 CCO s CEO personal communication, October 23, Canada is not included in this analysis since the delivery of health care services is of provincial jurisdiction. Each Canadian province and territory independently plans the delivery of cancer-related services and, as such, each has secured in place its own organizational architecture. This being said, the Canadian Strategy for Cancer Control (CSCC) does work with Canada s system of federal government and province-directed health care by creating networks of experts whose goal is to inform the CSCC Council regarding new knowledge formation, priority setting, and how to manage and implement cancer control activities in their area of expertise. 124 However, they do not make recommendations regarding the modes of operation through which services ought to be delivered across the provinces and territories. 58

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Ensure the provision of services according to homogeneous (national, provincial); standards (through designation of teams and accreditation of facilities) Promote regional flexibility and building on existing strengths as long as minimum standards are met. Another approach to promoting a seamless cancer journey that does not necessitate major reforms in health care services organization and that closely matches expressed patients needs is Patient Navigation. Patient navigation programs aim to help patients during their journey through a complex and fragmented cancer system through the provision of information as well as coordinated support and care Highlights of jurisdictions models of cancer care delivery In the following paragraphs we sketch the main features of the approach jurisdictions have taken to structure their cancer services delivery system, highlighting major commonalities and differences. Details of progress toward establishing such organizational architecture are presented in Chapter 7 on Main Accomplishments. Alberta and British Columbia: A provincial (agency) cancer program model In both Alberta and British Columbia, the organizational architecture can be characterized as an Agency-governed cancer control program, delivered regionally through specialized cancer centers, supported by a community outreach system. In Alberta, the organizational architecture for service delivery is a Provincial Cancer Network of centrally-operated (by the Alberta Cancer Board) facilities comprising two tertiary cancer centers, four associate cancer centers, and eleven community cancer centers. Alberta s facilities operated by ACB also include two fixed breast screening sites and three mobile breast screening services visiting small urban and rural communities throughout the province (Screen test program). In BC, the Provincial Cancer Program is an integration of Cancer Centres, Research Centres, Tumour Groups, Provincial programs (eg Radiation Therapy, Systemic Therapy), Provincial Networks and Community Cancer Centres and Clinics. The facilities include four BCCAoperated regional cancer centers, linked to 21 community cancer centers, six community cancer services, and twelve consultative (outreach) clinics. In general, the community outreach system involves partnerships between the cancer governing body (e.g. provincial cancer agency) and the health authority governing the facilities (community centers and clinics) providing cancer services. Both ACB and BCCA are responsible for coordinating the community cancer program throughout the province, while the host hospital/health authority is responsible for providing the space, maintenance and other supports. England, France and New Zealand: A regional cancer network model In England, France, and New Zealand, the organizational architecture can be characterized as a nationally-guided (by a national cancer plan), network-governed cancer control program, delivered regionally through cancer networks. In England, for example the current service delivery configuration was formerly proposed in 1995, when the Calman-Hine report indicated a 59

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need for horizontal integration of cancer services on a tumour site specific basis and recommended a fundamental restructuring of cancer services. The proposed new structure for cancer services provision was based on a network of expertise in cancer care, integrating primary care (to be the focus of care), secondary care (designated Cancer Units in district hospitals), and tertiary care (designated Cancer Centers). 125 The Calman-Hine report also recommended that multidisciplinary teams of all relevant specialists on a cancer site specific basis should be formed to provide advice on primary treatment and on relapsed disease. Moreover, it recommended the establishment of clear pathways of referral and follow-up between general practitioners, cancer units and cancer centers. The overall purpose of this integrated and systematized configuration of services was to improve access to, and provide uniform standards for, high quality care. The NHS Cancer Plan (2000) has taken this proposed organizational architecture forward by facilitating the creation of 34 Cancer Networks, which would integrate all cancer services providers within 1-2 million population catchment areas. In France the organization of health care services is dictated by the Health Ministry and is then regionally planned by the Agences régionales d hospitalisation (ARH) that translate Ministry guidance into three-year regional plans called Schéma régional d organisation sanitaire (SROS). In 2006, the new SROS (SROS III) included cancer care as a compulsory theme. The approach to cancer services organization described in the SROS III was informed by a legal document, published in February 2005, devoted to cancer services organization. The legal document was informed by the vision put forth in national cancer plan The SROS III sets out a regional organization of cancer services that involves 2 kinds of facilities: (1) Treatment cancer centers and (2) Associate local facilities for follow-up care, general medicine, and home care. 126 The treatment cancer centers and associate local facilities are to be organized into Regional and Territorial Cancer Care Networks. These networks are expected to establish links with other existing health care networks (e.g. palliative care). The Regional Cancer Care Networks are responsible for coordinating service providers and Territorial Cancer Care Networks, and for developing clinical guidelines. The Territorial Cancer Care Networks are responsible for ensuring continuity of cancer care at the local level. Each Regional Cancer Care Network will have a Regional Cancer Pole dedicated to specialized cancer care services (including appeals and expertise), clinical research, teaching and innovations. Cancer treatment facilities and radiotherapy centers will be acrreditated by the National Cancer Institute, which will grant permission to perform surgery, systemic therapy and other specific treatments. This organizational scheme also stipulates that the facilities providing cancer services will have to host a Cancer Coordination Center (3C) to allow cancer related activities to become more visible within the organization. The 3Cs must also promote the development of personalized follow-up and establish the foundations for a quality assurance process. In addition, these 3Cs are to facilitate the medical coordination of cancer care within the facility, in particular the implementation of a concerted and multidisciplinary approach to cancer care via multidisciplinary consultation meetings. Their responsibilities include quality assurance of the 125 Cancer Units are the designated structure for the diagnosis and treatment of common cancers and must undertake a sufficient volume of work to maintain sub-specialization skills. The Calman-Hine report recommended that local cancer units have input from non surgical oncology (clinical and medical oncology) and that cancer unit services development and cancer site specific protocol implementation be coordinated by a lead clinician. As for the small number of units providing needed radiotherapy, they would have to be linked to Cancer Centers, which are the designated facilities for specialist cancer care and for radiotherapy

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customized care program by ensuring that all patients receive customized care, receive individual follow-up, including support and help in their management, as well as ensure that all medical files comply with care standards. The intent is to make the 3Cs a one-stop contact in the hospital for patients (by providing patients with a unique medical contact person and contacts for patient associations). Finally it is hoped that, as a result of better logistical organization, the 3Cs will free-up providers time for improving communication with their patients. In New Zealand, the current organizational architecture for cancer services rests on six urbanbased Regional Cancer Centers with a secondary/tertiary care focus, acting as hubs in a hub and spoke model. 127 The establishment of Regional Cancer Networks as proposed in the NZ Cancer Control Strategy and NZ Cancer Control Action Plan, is intended to formalize existing collaborative initiatives on a wide-range of projects. 128,129 These Regional Cancer Networks are intended to facilitate coordination of cancer services across health providers at the primary, secondary, and tertiary levels and to serve as a vehicle through which organizations and stakeholders can work together to plan and coordinate services in accordance with defined national standards of treatment. These Regional Cancer Networks will take the form of managed virtual bodies linking cancer care providers (tertiary, secondary, and primary), private health care providers, non governmental organization (NGO) providers, public health organizations, consumer organizations, and District Health Boards (DHBs) throughout defined geographical areas to ensure delivery of quality co-ordinated, comprehensive cancer services across the cancer control continuum. 130 Nova Scotia and Ontario: A regional cancer program model In both Nova Scotia and Ontario, where provincial cancer control agencies are not involved in the delivery of health care services, the organizational architecture can be characterized as a provincially-guided (by the cancer agency s plan and programs), regionally-governed cancer control program, delivered regionally through specialized cancer centers and community services. In Nova Scotia, cancer services delivery is organized around three Specialized Cancer Centers that provide tertiary level cancer services. The two adut cancer centers in Halifax and Cape Breton assess about two thirds of new oncology patients. 131 The regional hospitals of District Health Authorities provide primary and secondary cancer services such as surgery and chemotherapy along with supportive and usually palliative care. 132 Some District Health Authorities, in partnership with the two adult provincial cancer centers, have opened Cancer Outreach Clinics wherein medical and radiation oncologists can monitor current patients and see new patients for assessment and care planning. 133, 134 This system is also supported by a Patient 127 Hub and spoke model: Any architecture that uses a central connecting point. It is the same as a star topology in a network. In this case the Regional cancer centers act as the hub and the primary and secondary services providers as the spoke. Barber J, Hewitt J, Long J. Midland DHBs Cancer Control Network.Progress to date. Presentation at the Ministry of Health seminar titled: Establishing Regional Cancer Networks in New Zealand, March 30, NZ action plan p. 7; p NZ government. Regional Cancer Networks help cancer patients (2006) 130 Childs, J. Establishing Regional Cancer Networks in New Zealand. Benefits and Challenges. Presentation at the Ministry of Health seminar titled: Establishing Regional Cancer Networks in New Zealand, March 30, Personnal communication, Dr. Andrew Padmos, CCNS former Commissioner, November 10, 2006 letter. 132 Personnal communication, Dr. Andrew Padmos, CCNS former Commissioner, November 10, 2006 letter. 133 CCNS. Accessed : March 6, CCNS. District Cancer Program. 61

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Navigation Program. Such configuration of service delivery is progressively being transformed with the implementation of the District Cancer Programs (DCPs), an approach that stresses the importance of taking cancer care into communities. DCPs essentially underscore the importance of working with communities in developing cancer services from prevention to palliation, and delivering such services closer to the patient s residence. 135 In the DCP model, care is provided by physicians, DHA staff (nurses, pharmacists, support staff) and other health care providers in the district. The model is intended not only to reduce the travel burden for patients, but also to help streamline communication and to clarify roles of care providers. In Ontario, significant changes that followed the Cancer Services Implementation Committee Report in 2001