A Canadian experiment with breast cancer information exchange pilot projects

PTiENT EdUCATiON md COMEhCj Patient Education and Counseling 28 (1996) 169-174

ELSEVIER

A Canadian experiment with breast cancer information exchange pilot projects Jennifer Bradbury”,“, Heather Bryantb, Tamara Caseboltc, Jean Latreilled, Joanne Pawelekb, Ivo Olivotto”, Ontario Project Teamf, Preventive Health Services Division, Health Services Directorate, Health Canadag “BC

and Yukon Breast Cancer Information Project, 565 West 10th Ave, Vancouver, British Columbia, V5Z 4J4 Canada hBreast Cancer Info Link, PrairielNWT, 1331-29 Street NW, Calgary, Alberta, T2N 4N2, Canada ‘Atlantic Breast Cancer Information Project, 1 Rochford Street, Suite 1, Charlottetown, Prince Edward Island, CIA 3Tl Canada ‘Hopital Hotel-Dieu de Montreal, 3840 rue Saint Urbain, Montreal, Quebec, H2W 1 T8 Canada ‘BC Cancer Agency, 600 West 10th Ave, Vancouver, British Columbia, V5Z 4E6 Canada ‘Ontario Breast Cancer Information Exchange Project, 2075 Bayview Avenue, Toronto, Ontario, M4N 3M5 Canada 86th Floor, Jeanne Mance Building, Tunney’s Pasture, Ottawa, Ontario, KIA lB4 Canada

Accepted 1 March 1996

Abstract Respondingto concernsarticulated by Canadianwomen living with breast cancerand their families, the federal government hasprovided $2.7 million over five years to establishfive regional information exchangepilot projects. Women experience considerablevariation in accessto information reflecting different resources,communication links and health care delivery systemsin each province or territory. The five information projects are taking different approachesto enhancecoordination of existing resourcesand involve women living with breast cancer to improve accessto credible, timely, breast cancer information. Keywords: Breast Cancer; Information; Government; Canada

1. Introduction In December 1992, the Canadian government, responding to perceived gaps in care [l], acknowledged that breast cancer was a national health concern [2]. The government announced a *Corresponding

author. Tel.: 604 872 4400, fax: 604 879

9267.

073%3991/96/$09.50 PII

SO738-3991(96)00898-l

$25 million commitment and called for the establishment of a Breast Cancer Research Challenge Fund, the development of five regional Breast Cancer Information Exchange Pilot Projects and other initiatives to enhance preventive activities and the care of women with breast cancer [2]. The allocation of $2.7 million over five years initiated the development of five Breast Cancer Information Exchange Pilot Projects (Fig. 1). A

@ 1996 Elsevier Science Ireland Ltd. All rights reserved

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Fig. 1. Each

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Prairies

& Northwe

Atlantic

Provinces

1st Territol

of five broad geographic regions of Canada are served by a Breast Cancer Information Exchange Pilot Project.

request for proposals was issued on March 29, 1993 and the deadline for receipt of submission was set for May 17, 1993. An external advisory group, including women living with a diagnosis of breast cancer, evaluated the proposals and made recommendations on the selection of host agencies for the pilot projects. Funding agreements were signed between Health Canada and the five sites early in 1994. Each site would receive $lOOOOO annually for five years to carry out its pilot project. The prime objective of the Breast Cancer Information Exchange Pilot Projects is to assist persons living with breast cancer and their families, caregivers and those at risk of contracting breast cancer in making informed decisions about a variety of concerns related to breast cancer. These five-year pilot projects should further our understanding of the feasibility and effectiveness of various information strategies. A secondary objective of the pilot projects is the encouragement of partnerships among those in-

volved in the collection and dissemination of breast cancer information. Each pilot project will build on existing networks, services and information material and will develop specific expertise to disseminate information on prevention, early detection, treatment, follow-up care and a range of emotional and social support services. Existing resources and services vary between the regions of Canada. However, the guiding principle for the pilot projects is to provide comprehensive, timely, easily accessible information, responsive to the needs of the population of interest. The focus is client oriented and client driven, with a desire to be accessible to women in both rural and urban areas. The pilot projects are evolving differently, but each has established an advisory panel with broad regional representation including breast cancer survivors, their family members, and those at risk for contracting breast cancer. Other representatives include caregivers, researchers,

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those at risk for contracting breast cancer. Other representatives include caregivers, researchers, policy makers, community leaders, and representatives of volunteer associations and support groups. The inclusion of women who have experienced breast cancer has greatly enhanced the relevance of each of the projects. The primary functions of the Breast Cancer Information Exchange Pilot Projects include strengthening existing information networks between treatment centres, support services and breast cancer organizations in the region, building on existing resources, collecting information and devising innovative approaches to disseminate the information to the target clientele. The five projects have established formal links via fax, teleconference, electronic mail, and bi-annual meetings.

2. The BC and Yukon Information Project

Breast

Cancer

The BC and Yukon Breast Cancer Information Project (BCIP) is hosted by the BC Cancer Agency and the BC and Yukon Division of the Canadian Cancer Society. The purpose of the BCIP is to ensure that personalized, timely, accurate breast cancer information is accessible to the people of BC and the Yukon. Six objectives of the project include: (1) to identify what information and support is needed, (2) to identify targets for information and support, (3) to determine who will deliver the information and support, (4) to ensure that breast cancer information and support is delivered to the people who need it, (5) to foster a collaborative partnership with other agencies disseminating information and support, and (6) to ensure that the project has sufficient resources to continue operation beyond the pilot stage. The regional advisory panel is responsible for ensuring that the project achieves its objectives. Made up of approximately 14 members, the panel has equal representation from breast cancer survivors and health care providers, in order to ensure that the information needs of women with breast cancer are well understood.

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The BCIP has divided its efforts into four initiatives. Initiative 1: Expand and market the existing Cancer Information Telephone Line in regards to breast cancer. This l-800 line has been serving the BC and Yukon region for 9 years as a general cancer information line. It is staffed by trained volunteers who provide current, accurate cancer information, emotional support and community referrals in English, Mandarin, and Cantonese. The information project will expand the service with the addition of twenty new volunteers, significant expansion of the breast cancer information database and the addition of resources to the line such as ready access to a trained nurse coordinator and an oncologist with breast cancer expertise A marketing plan is currently being implemented to advertise the Breast Cancer Information Line throughout BC and the Yukon. Initiative 2: Conduct an in formation and support needs assessment study for women who are in the early diagnosis and treatment stage of breast cancer. A request for proposals has been issued to seven companies with an expectation of completing the needs assessment by January 1995. Initiative 3: Develop a resource booklet for women in the BC and Yukon region with breast cancer. The regional advisory panel has examined existing resources and determined that a need exists for a comprehensive breast cancer resource manual. Initiative 4: Establish an ongoing evaluation of the BCIP in order to provide an understanding of the feasibility and effectiveness of the various strategies for disseminating information.

3. Breast Cancer Info Link:

PRAIRIE/NWT

A consortium representing the Alberta Cancer Board (Cancer Prevention Program, Screen Test and the Tom Baker Cancer Centre), the Canadian Cancer Society (Alberta/NWT Division), and the University of Calgary (Community Health Sciences) is hosting the pilot project for the vast region of Alberta, Manitoba, Northwest Territories. and Saskatchewan.

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Breast Cancer Info Link is a user-driven, community-based model for information exchange about breast cancer. Two guiding principles are central to this project: (1) Any information service should be user-driven. Women who will be accessing the information through this service will define the questions to be addressed. They will also be asked to discuss and recommend which strategies are most appropriate and relevant to their needs. The ‘providers’ of information will also be consulted they will come to consensus on appropriate responses to the key questions, as well as identify new areas of knowledge. [2] The expertise and resources to disseminate valid, user-friendly information exists and will be mobilized through a community-based approach. Info Link will build on existing networks, services, and information sources. The purpose of the project is to facilitate the collaboration between (and among) the consumers and producers of the information. The focus of Info Link will be in the rural areas. This is because resources outside of major cities, while present, may be scattered and difficult to access. However, women in urban areas will also benefit from the availability of consolidated information. The identification, consideration and development of the key information to be exchanged will occur via a process involving needs assessment, focus groups (12 ‘user’ and ‘provider’ units have been identified so far), an Exchange Network, community panels, an Advisory Panel and ongoing evaluation.

4. The Ontario Breast Exchange Project

Cancer Information

The primary purpose of the Ontario Breast Cancer Information Exchange Project (OBCIEP) is to serve as a catalyst for cooperative activity among stakeholders in breast cancer information. The project’s vision is to create an information infrastructure that will facilitate stakeholder‘s ability to share existing resources, identify information gaps, produce and review

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materials against recognized priorities and standards and eliminate duplication of effort. The approach of serving as a catalyst was selected because many organizations already exist in the region who were engaged in information exchange about breast cancer. What was needed was a coordinating effort. The OBCIEP works with an advisory panel of 34 members, of whom 50% are breast cancer survivors or family members. The OBCIEP has divided its efforts into three main areas or themes focusing on different aspects of breast cancer information. Theme 1: Coordinating Breast Cancer Information is concentrating on the activities concerning current information and linking existing resources. A database has been established which contains information about Ontario organizations which have a role in breast cancer and the services they provide. Based on the information collected, an analysis will be undertaken to determine informational gaps and duplication of effort. Theme 2: Access to Information by Women and their Familles is responding to the identifiable gaps in breast cancer information for individuals directly affected by breast cancer. Currently, ‘A Guide to Unconventional Cancer Therapies’ is being produced that wiII provide women, their families, and health care professionals with general information various about unconventional therapies and suggestions on where to find more information. The expected release date is October 1994. Other planned activities include a request for proposals to respond to northern and native informational issues and a partnership with the Breast Cancer Support Network for Ontario Project to establish a provincial storefront Breast Cancer Resource Centre in Toronto. Theme 3: Access to Information by Health Care Professionals is currently focussing on the informational needs of family physicians regarding breast cancer. The information needs of other health care professions will be explored in the future. A telephone survey with family physicians has been conducted to determine their informational needs and their perception of patient‘s information needs. Based on the results

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of the survey, recommendations will be made and strategies to respond to identified gaps will be developed.

5. The Quebec Breast Exchange Network

Cancer

Information

The Quebec Breast Cancer Information Exchange Network proposes to link together all organizations in Quebec in the fight against breast cancer. It hopes to facilitate communication between these groups. The first step has been to create a questionnaire to determine what existing organizations are doing and what their needs are in terms of information. The province of Quebec does not have a cancer control agency nor a breast screening program, but the province has three cancer societies (the Canadian Cancer Society, la Fondation Quebecoise du Cancer and L’Association du Cancer de L’est du Quebec). The arrival of another group is seen with a degree of anxiety and scepticism. Positioning the project team as facilitators and providing assurance that the project will not duplicate what already exists, has eased a lot of the tension. The alliance that is to be created will be nurtured by state of the art communication (fax, modem, electronic mail) and by a news bulletin. The role of the project is evolving. Many of the participating groups have indicated an interest in assuming an advocacy role. They feel that the project team will be in a unique position to inform the government of their needs and desires.

6. The Atlantic Project

Breast

Cancer Information

The Atlantic Breast Cancer Information Project (ABCIP) is a regional partnership between the Prince Edward Island, New Brunswick, Nova Scotia, and Newfoundland/Labrador divisions of the Canadian Cancer Society (CCS). Based in the PEI Division of the CCS, the project mission is to communicate, in an effective manner, reliable, up-to-date information about prevention, early detection, treatment, and follow-up care of

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breast cancer to women, their families, and health professionals. The primary objective of the ABCIP is the provision of specific information to women who may lack access to breast cancer information due to cultural, economic, geographic, or social differences. A major assumption for the project is that, in developing strategies to reach the difficult to reach women, information will become more accessible to all women. Three secondary objectives include: (1) the development and enhancement of partnerships with agencies which collect and disseminate breast cancer information, (2) the initiation of a l-800 telephone line, and (3) the provision of specific information to health care professionals. The ABCIP Advisory Panel defines the overall project priorities information needs and gaps in current breast cancer information available in the region and reports to a steering committee composed of the four Atlantic CCS division presidents. On-going evaluation has been incorporated into the project by the appointment of an evaluation representative from each province. Special challenges in the development of this project include: (1) development of a computerized information data bank containing timely and accurate information about breast cancer and regional resources (2) building an accessible delivery system utilizing target-specific promotion and delivery strategies (3) implementation across four provinces in which existing services and policies differ and (4) implementation of the project in a region with significant geographic, cultural and ethnic diversity. Workgroups have been formed within the ABCIP advisory panel to address these challenges. Success for the ABCIP will be defined by a heightened public awareness of breast cancer brought about by increasing the access and utilization of breast cancer information and resources in the Atlantic region, particularly by women who have previously been under-served. Other anticipated outcomes will be the strengthening of regional and national networks and increased advocacy for essential breast cancer services throughout the Atlantic region.

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7. Summary The five federally funded information exchange projects have unique pre existing resources and challenges. The common principles guiding all the projects are: (1) involvement by regional advisory panels of which approximately half of the members are breast cancer survivors, (2) improvement in the accessibility of credible breast cancer information to women, their families, care givers and those at risk for contracting breast cancer and (3) coordination of organizations and groups in their region involved in the collection and dissemination of breast cancer information in order to enhance collaboration and avoid duplication. All of the projects aim to achieve the prime objective of assisting

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persons living with breast cancer and their families in making informed decisions about a variety of concerns related to breast cancer. Improvement in the quality of life and quality of care for women with breast cancer and their families is the goal.

References [l] Greene B. Breast Cancer: Unanswered Questions. Ottawa: Government of Canada, 1992. [2] Health Canada. Government Response to The Fourth Report of the Standing Committee on Health and Welfare, Social Affairs. Seniors, and the Status of Women on Breast Cancer. Ottawa: Government of Canada 1992.