Status Report

Canadian Association of Provincial Cancer Agencies

Donald R Carlow

The Canadian Association of Provincial Cancer Agencies (CAPCA) is a national organization consisting primarily of provincial cancer agencies. Having evolved gradually over the past 20 years, it recently became a formalized organization committed to making a significant contribution to Canada's overall cancer control effort. The purpose of this status report is to provide information about CAPCA, its history, what it is, what it does, where it is going and some indication of how it will get there. Although still in its early stages, the Association has great potential to make a significant impact on cancer control in Canada.

Role of Provincial Cancer Agencies

In order to understand CAPCA's potential, it is important to know the role and function of individual provincial cancer agencies throughout Canada. Seven of the ten Canadian provinces have formally structured provincial cancer agencies, most of which are responsible for a provincial system of cancer control. In general, these provincial systems usually embody the following goals in their missions.

• Reducing the incidence of cancer
  
  
• Reducing mortality from cancer
  
  
• Improving the quality of life of those living with cancer

For the most part, these agencies apply knowledge and best practices to a spectrum of activities, including prevention, screening, diagnosis, treatment, rehabilitation/ support and palliative care. They also carry out professional, technical, patient and public information activities as well as conducting significant levels of basic research, translational research, clinical research and population-based epidemiologic research. All of the foregoing is aimed at achieving the key elements of their missions. Many of the provinces have cancer acts that clearly define these responsibilities; those without cancer acts have government-approved mandates established under provincial societies' acts or other enabling legislation.

A few decades ago, most provincial cancer agencies were devoted largely to clinic-based, modality-oriented treatment, such as radiation and systemic therapy. There has been gradual progression toward developing population-based systems of cancer control and geographically distributed services, along with networks and linking systems to achieve consistent patient-centred, evidence-based care. Although the extent to which provincial cancer agencies have adopted this full population-based mandate still varies, there has been significant movement toward the full realization of such a system in most provinces, and this is occurring at an increasing rate.

In many respects, provincial cancer agencies can be seen as the driving force behind cancer control activities within each province. This is not to say that they perform all these activities alone. Rather, they work in an extensive number of collaborative relationships. For example, there are links with the Canadian Cancer Society in areas such as cancer prevention and cancer information, with various regional health authorities in delivering care outside the formal cancer system, with academic institutions in areas such as research and education, with hospice societies and palliative care associations in pain and symptom control and palliative care, and with host hospitals as they relate to the provision of diagnostic and support services.

History of CAPCA

The Canadian Association of Provincial Cancer Agencies had its modest beginnings approximately 20 years ago when many of the western provinces saw the need to have provincial cancer agencies get together to discuss matters of common interest and to share issues and developments in the various provinces. In the mid-1980s other provinces joined, participating in a somewhat loosely structured organization that held annual meetings in different locations throughout the country. By the late 1980s all Canadian provinces were involved, and slowly the focus shifted to a more structured approach. Meetings then included information sharing, education, workload comparative data sharing, collaboration with national partners and policy development. Linkages were developed with many organizations such as the Cancer Bureau at Health Canada's Laboratory Centre for Disease Control and the Canadian Council on Health Services Accreditation, as it related to defined standards development for accreditation of provincial cancer agencies and cancer centres supported by trained accreditation surveyors.

CAPCA has actively participated in the Canadian Coalition on Cancer Surveillance [see related Status Report in this issue], a coalition concerned with developing, standardizing and integrating cancer control information. It has also been involved in recent collaborative efforts to establish the Canadian Strategy for Cancer Control [see related Status Report in this issue]. CAPCA has made submissions and representations to the emerging Canadian Institutes of Health Research for the possible establishment of an institute for cancer research. In addition, it has undertaken some cooperative activity in human resource planning for cancer services for Canada.

Considerable work has been done to develop interprovincial workload comparisons for a variety of services. This has enabled provincial cancer agencies to compare resource use, benchmark best practices, learn from each other and undertake initiatives in several provinces to improve practices. CAPCA has given significant input into other national initiatives, such as the standards developed by the Canadian Association of Psychosocial Oncology and the cancer staging project undertaken by the Canadian Committee on Cancer Staging with financial support from the Canadian Cancer Society and the National Cancer Institute of Canada (CCS/NCIC).

It has also been encouraging to see the development of key groups within CAPCA. Collaborating with the CCS/NCIC, a research group has met on several occasions in connection with CAPCA's annual meeting. Recently, a systemic therapy group was established, which is devoted to developing consistent standards for chemotherapy administration across Canada.

Recognizing that the Association could contribute even more to the development of cancer control in Canada, CAPCA decided to become more formal, to establish more clearly its mission and vision and to define a board and policy-setting structure. A landmark meeting in Vancouver in February 1998 accomplished the initial work on a mission and vision, which served as the basis for developing a formal set of bylaws for the Association that were recently approved under the Canada Corporations Act. This led to the first formal meeting of the Board of Directors in Quebec City on October 28, 1999.

Mission

The Canadian Association of Provincial Cancer Agencies is a national organization representing provincial and territorial agencies engaged in cancer control. CAPCA exists to support the reduction of the burden of cancer through effective leadership, collaboration, communication and advocacy for cancer control.

The mission of CAPCA will be achieved through these activities.

• Providing leadership in the coordination of cancer control matters as the national voice of organized cancer control development and program delivery
  
  
• Promoting the collaborative development and adoption of standards and guidelines for all aspects of cancer control
  
  
• Contributing to the development and implementation of a national cancer control strategy
  
  
• Advocating organized cancer control nationally and provincially
  
  
• Collaborating with other organizations to advocate public policy change to improve cancer control
  
  
• Effectively communicating and working with key partners such as the CCS/NCIC, Health Canada and the Council of Deputy Ministers of Health

Vision

While further elaboration of CAPCA's vision will take place over the next months, it is clear that our provincial cancer agencies, individually and collectively, are a significant part of Canada's effort to reduce the burden of cancer throughout this country. They are a significant source of new knowledge about cancer, including new developments and more effective means to prevent, diagnose and treat this disease. Cancer agencies are the main providers of advances in cancer control to patients, families and the public and, as well, they are the major providers of education for health care professionals, patients and families. Cancer agencies and their centres are not only local and regional resources, but through their collective efforts, are an important national resource capable of contributing far beyond what they do within their own jurisdictions. In many respects, provincial cancer agencies embody those steps concerned with translating research into policy and practice, as they carry out cancer control activities within each of the provinces.

It is important to understand that the existence of provincial cancer agencies in seven out of ten provinces is unique in comparison with other countries. Developing a national cancer strategy with clear goals and specific directions, linked to an already existing well-developed system for implementation, provides an unparalleled opportunity for Canada to have a model system of cancer control delivery with outcomes that cannot be matched anywhere else in the world.

The vision for CAPCA will be underpinned by the key principles outlined below.

• An understanding of the profound and universal impact of cancer and the importance of an invincible alliance among agencies, centres, constituents and collaborators-in other words, CAPCA cannot fulfill its mission alone and will work with many others
  
  
• Recognition of the importance of unity and common purpose to enable CAPCA and its partners to make significant contributions to cancer control
  
  
• A continuing ability to enhance the linkage between research, policy and practice as a fundamental tenet of cancer control
  
  
• An understanding that an effective cancer care delivery system is an important element of cancer control

Elements of the vision that have been under active discussion include the following.

• CAPCA will function as a multi-centre, multi-nodal, virtual, national organization linked by common strategies, policies, standards and practices for cancer control and supported by unifying structures that include the effective application of technology
  
  
• CAPCA will strive to achieve consistent standards of cancer control and care with the best practices of its constituents moved up to the national level and consistently applied across all provinces
  
  
• CAPCA will develop effective mechanisms for the consistent dissemination of standards and information that will translate into practice

With the realization of this vision, Canada has an opportunity to achieve significant improvements in cancer outcomes and could be seen by the rest of the world as an example of a model system of cancer control-a standard by which other systems could be measured.

Membership

CAPCA's membership includes active and associate members. Active members are all the provincial cancer agencies and other provincial and territorial organizations with similar responsibilities for cancer control. Associate members include organizations or agencies involved in cancer control, the CCS/NCIC being a prime example.

Board of Directors

Each active member organization is entitled to appoint to the Board one director who is either its chief executive officer or another senior staff member. Associate members shall be entitled to elect two directors from among their respective boards or senior staff. The Board of Directors includes three trustees drawn from the boards of provincial cancer agencies and appointed by the committee of trustees that serves CAPCA.

The Board structure was formally defined at its first meeting in Quebec City, as outlined in Table 1.