Breast Cancer - Centre for Chronic Disease Prevention and Control

Centre for Chronic Disease Prevention and Control

Community Capacity Building Component

Community Capacity Building Projects 1999 - 2000

National Networking Project, Part II
Strengthening and Expanding Breast Cancer Information and Support Networking in New Brunswick
Strengthening and Expanding the Newfoundland and Labrador Breast Cancer Information Partnership
Development of a Nova Scotia Breast Cancer Network
Breast Cancer Information and Support in PEI
Towards Ideal Toll-Free Breast Cancer Information and Support Service(s) - Phase 2
Virtual Community Feasibility Project - Building Capacity for Tomorrow
Responding to Diversity Phase II
Breast Cancer Partners Advisory Committee: Provincial and Regional Mission
Breast Cancer and Women in Ethnocultural Communities
Collaboration and Partnership: Planning for Manitoba's Breast Cancer Information and Support Needs
A Saskatchewan Breast Cancer Network
A Provincial Strategy for the Coordinated Development and Dissemination of Breast Cancer Information and Support Services
Breast Cancer in the NWT: Building Capacity for Community Support and Information
Alliance for Breast Cancer Information & Support (BC & Yukon)

National Networking Project, Part II

Sponsor: Canadian Breast Cancer Network

Current Partners:

Action for Breast Cancer Calgary (Calgary)
Breast Cancer Action Kingston
Breast Cancer Action Manitoba (Winnipeg)
Breast Cancer Action Montreal
Breast Cancer Action Nova Scotia (Halifax)
Breast Cancer Action Ottawa
Breast Cancer Action Saskatchewan (Regina)
Canadian Breast Cancer Foundation (CBCF - Toronto)
Canadian Breast Cancer Research Initiative (CBCRI - Toronto)
Canadian Cancer Society, National (CCS - Toronto)
Health Canada (Ottawa)
National Breast Cancer Coalition (NBCC - Washington, D.C.)
National Cancer Institute of Canada (Toronto)
New Brunswick Breast Cancer Network (Fredericton)
Ontario Breast Cancer Support and Information Service - Willow (Toronto)
Prince Edward Island Breast Cancer Network (Charlottetown)

Project Goals:

To continue to build a strong national organization that can act as the national voice of women affected by breast cancer.
To build on community development activities, including educational workshops and information and resource sharing undertaken in Part I, to improve communications, linkages and collaboration within the breast cancer community and cross-culturally.
To develop new approaches to support and encourage the initiatives of under served women to become full partners in the breast cancer community through community development and community outreach initiatives and to improve the CBCN's ability to represent them.
To continue initiatives to encourage increased consumer participation in breast cancer research and policy.

Objectives:

Further develop the Network's capacity to serve as the national voice of Canadians affected by breast cancer; serve as a link between groups; provide partners with educational opportunities; and support and enable the CBCN's current partners as well as adding new partners. Collaborate with breast cancer groups to further develop their capacity and influence so that they can better serve their membership and act as advocates on their members' behalf.
Conduct a national needs assessment on one under served group to improve the ability of the CBCN to represent the needs and interests of this community. Under served groups are identified as rural women, young women, aboriginal women, women of colour, women of different ethnic, cultural and religious backgrounds, lesbians, Jewish women, differently-abled women, poor women and elderly women.
Initiate intersectoral collaboration with other stakeholders, including nurses, doctors, librarians, women's organizations, churches, unions, and corporations with a large number or a majority of female employees, among others. Intersectoral partners will bring new and important perspectives to the fight against breast cancer, and they will also bring additional resources to the battle. Contact with the sector will be initiated nationally by the CBCN, and contact will be encouraged and facilitated regionally and locally through the representatives of partner groups. Meetings will be held to discuss methods of collaboration that will further the objectives of both sectors. Groups will be encouraged to develop ways of staying in contact and maintaining partnership on a long-term basis, including adding each other to their mailing lists; exchanging newsletters and other publications; Web site linking; and the co-sponsorship of activities and events.

The preparation of a project Sustainability Plan, including the development of strategies to diversify funding sources.
The evaluation of Part II activities.

Target Audience:

The CBCN has identified three main audiences to be reached:

The large grassroots survivor community, including breast cancer support and advocacy groups and under served groups
Organizations affiliated with breast cancer care, researchers, fund raisers and health care professionals
Intersectoral groups, including nurses, doctors, librarians, women's organizations, churches, corporations with a large number of female employees, and Aboriginal, Black and other ethno-cultural organizations, among others

Key Activities:

1. Community Development

How to Write Funding Proposals Workshops & Handbook: Three regional workshops will be held to train 60 lay representatives from breast cancer support groups how to develop funding leads and how to write funding proposals. Minutes will be taken at each workshop, and the Network will publish a bilingual handbook on funding that will be widely distributed in the community and will be posted on the CBCN's Web site.

Community Capacity Building Workshops: The CBCN will fund facilitators for community capacity building workshops, including topics such as board structure and functioning, fund raising, volunteer selection and training, public speaking, establishing working relationships with health professionals, making and sustaining community connections, effective promotion, media relations and others, and some topic issues, such as metastatic breast disease. Consultants or facilitators will be selected by breast cancer support groups.

Under served Groups: Consultations will be held with the CBCN's partners to prioritize one under served group. Project staff will work with this community to conduct a needs assessment on a national level. A small, representative working group will be established to assist with this activity. The results of the needs assessment will point to future activities that can be undertaken. The results of the needs assessment will also enable the CBCN to better serve and represent the under served group. A bilingual report on the findings will be prepared and distributed. It will also be posted in English and French on the CBCN's Web site.

Scientific Training, Part 1: Six breast cancer survivors will be given the opportunity to improve their ability to critically appraise research proposals and policy alternatives, and to participate in decision-making processes by attending Project LEAD, an intensive breast cancer training program

Scientific Training Exploration Committee: The Scientific Training Exploration Committee will be composed of national breast cancer and cancer organizations and will explore the idea of creating a scientific training program similar to Project LEAD in Canada. The Committee will establish terms of reference and a schedule that will permit it to issue a preliminary report before the end of March 2000.

2. Community Outreach and Information and Resource Sharing

Current Issue Papers (CIPs): Three informational documents targeted to survivors, stakeholders, partners and intersectoral contacts will be researched, published and distributed in English and French. The CBCN has published four previous CIPs: The Tamoxifen Dilemma; Induced Abortion and Breast Cancer; Genetic Testing & Research for Breast Cancer; and Environmental Chemicals and Breast Cancer.

Information Fax-Backs: A regular, bilingual information fax-back will be sent every month to six weeks to partners in the breast cancer, health and intersectoral communities to provide them with timely information about the services and activities of breast cancer support groups, news from the wider non-profit and charitable sector, and information about conferences and new publications. The fax-backs will also be available by request by E-mail or regular mail, and posted on the CBCN's web site.

Regular Mailings: Regular Mailings will act as an adjunct to the information fax-backs when material received from groups is too long to be faxed or when information is not time-dated. Bilingual mailings will take place approximately six times a year, sometimes in conjunction with the Network News, other times as a separate mail-out.

Expanded Web Site: A Bulletin Board will be added to the CBCN's Web site. Breast cancer support groups and intersectoral groups with information of interest to the breast cancer community will be able to submit topical information to the Bulletin Board. The Bulletin Board will be updated weekly and will contain information on events, activities, fundraisers, alerts, announcements of new publications, requests for individuals to participate in studies within the breast cancer community, information on workshops or training sessions, urgent requests for information or assistance, etc. Postings will appear in both English and French sections of the Web site. Groups without Internet access can also request that it be mailed or faxed.

CBCN Resource Centre: The CBCN Resource Centre consists of books, magazines, pamphlets, posters, audio- and videotapes and on-line resources/databases of interest to breast cancer survivor support groups and individuals. The material in the Resource Centre will be organized according to the Dewey Decimal System, and a list of the material will be made available in hard copy, on disk and through the CBCN's Web site. A short version of the list containing a sampling of resources, will be made available in hard copy for groups and libraries to distribute to their users.

Weekly Newspapers Campaign About the CBCN and its Partners: A media campaign will be undertaken to increase the visibility of the CBCN and its partner groups. Priority will be given to obtaining coverage about the CBCN and partner groups in weekly newspapers because they serve small towns and rural areas where information about breast cancer services is often hard to come by. The CBCN and partner groups will collaborate to write press releases that will be sent by E-mail or fax. Each press release will be individualized to stress the services provided by the local partner group. Follow-up will be conducted to see whether the material was used, to arrange interviews with representatives of the CBCN or local breast cancer survivor support groups, or to provide photographs or photo-ops.

Community Contacts Database: The bilingual Community Contacts Database, which lists breast cancer survivor support groups, will be improved by adding detailed information about the regular services, activities and programs of each group as well as indicating whether the organization has acquired expertise in a specific area, such as breast cancer drugs, mammography, lymphedema, etc. This information will be made available in hard copy and on the CBCN's Web site.

Large and Small CBCN Poster: Two bilingual CBCN posters will be designed, printed and distributed to increase awareness and promote the value of a national breast cancer network in Canada. Posters will be sent to partners, intersectoral organizations and other cancer and health services.

Challenges:

adding to the CBCN's membership and support base - giving breast cancer support groups good reasons to become members of the CBCN
becoming a centre of excellence for information and resources on breast cancer
increasing the CBCN's visibility in other sectors
completing all the activities in six months!
the CBCN will have funded facilitators for approximately 20 Community Capacity Building workshops across the country
six breast cancer survivors will have received scientific training

Intended Outcomes:

Workshops:

approximately sixty lay representatives from breast cancer support groups will have attended three How to Write Proposals workshops in different regions of Canada.
reports on all workshops will have been written and these bilingual reports will have been distributed to stakeholders and partners and posted on the CBCN's Web site
the Scientific Training Exploration Committee will have established terms of reference and a time frame to explore the idea of creating a scientific training program in Canada, and will have provided a preliminary report.
a needs assessment will have been conducted on one under served group and a bilingual report written and distributed.
three Current Issue Papers and How to Write Fund Raising Proposals handbook will have been researched, written and distributed in French and English by fax, E-mail, hard copy and/or on-line format
several Information Fax-Backs will have been sent
regular Informational Mailings will have gone out
the CBCN Web Site Bulletin Board will have been established
indexing of the CBCN Resource Centre will have been completed, and information on the Resource Centre will have been sent to partner groups, intersectoral organizations and libraries
the Weekly Newspapers Campaign about the CBCN and its Partners will have been completed
the Community Contacts Database will have been expanded
the large and letter-sized CBCN posters will have been designed, printed and distributed
evaluation results on the overall project and on each activity will have been used to formulate NNP Part III activities and information resources that will be of use to the breast cancer community and intersectoral stakeholders
progress will have been made in developing strategies to secure alternate sources of funds and in diversifying the Network's sources of funding

Contact Person:

Jackie Manthorne, Executive Director

Strengthening and Expanding Breast Cancer Information and Support Networking in New Brunswick

Sponsor: New Brunswick Breast Cancer Network

Partners: New Brunswick Breast Cancer Network, New Brunswick Breast Cancer Information Partnership

Goal: To increase the capacity of New Brunswick breast cancer survivors, groups, organizations and institutions to work in partnership to assess and address breast cancer information and support needs in the province, particularly for women who have been recently diagnosed.

Objectives:

To provide opportunities to strengthen and expand recently formed linkages among existing agencies sand organizations involved in breast cancer information and support.
To gather and share information/knowledge from all areas of the province in order to clarify who is doing what in the provision of information and support in each of the seven regions, and within both Anglophone and Francophone populations; and to evaluate existing programs and strategies.
To identify any major gaps in information and support.
To develop a strategic plan for providing information and support to women who are living with a diagnosis of breast cancer, their families and caregivers. This plan will build upon any existing or developing programs ans strategies that are considered to be effective. The first priority will be to meet the needs of newly diagnosed women.
To begin implementation of the strategic plan.
To secure sustaining funds a) to continue to increase the capacity of the network b) to assess and address information and support needs in the province c) to implement components of the strategic plan that are identified as priorities.

Target Audience:

Women diagnosed with breast cancer across the province.

Key Activities:

A provincial meeting in November 1999 to bring together members of the NB Breast Cancer Network, the NB Breast Cancer Information Partnership and additional participants from regions and/or organizations not represented by the two groups. At this meeting, participants will share information about programs and strategies operating in their own regions or linguistic groups and they will examine resources that address information and support needs. Information from this meeting will be compiled and combined with additional research identifying what provincial health agencies are planning in the next year. Thus gaps will be identified. A report will be circulated to attendees.
A second meeting will be held to develop a strategic plan to a) evaluate, expand and strengthen existing programs to meet the information and support needs of newly diagnosed women and b) to agree on other priority areas and begin development of a plan to address information and support needs in these areas and c) to form subcommittees as appropriate.
Subcommittee members will meet regularly to work out implementation details and to allocate responsibilities for implementation.
A funding committee will be struck to identify funding sources and apply for funding.

Potential Challenge:

Obtaining and sustaining strong and committed representation from all areas of the province.

Intended Outcomes:

Two key networking groups in New Brunswick will strengthen their linkages and increase their capacity to work collaboratively to meet information and support needs of women diagnosed with breast cancer across the province.
Recently developed strategies to meet the information needs of newly diagnosed women will be evaluated and refined.
Gaps in the provision of information and support will be identified and work will begin to fill the most serious gaps.
Breast cancer support groups may be formed in areas without other support programs.
Sustaining funds will be found to support key information and support strategies, particularly for newly diagnosed women.

For further information: Wendy Morse

Strengthening and Expanding the Newfoundland and Labrador Breast Cancer Information Partnership

Sponsor: Faculty of Medicine, Memorial University of Newfoundland.

Partners: Memorial University of Newfoundland, Faculty of Medicine & School of Nursing/Centre for Nursing Studies.

Breast Screening Program for Newfoundland and Labrador
Canadian Breast Cancer Network
Newfoundland Cancer Treatment and Research Foundation, Dr H Bliss Murphy Cancer Centre
Canadian Cancer Society, Newfoundland and Labrador Division
seven (7) women from Newfoundland and Labrador living with breast cancer

Goal: To increase the capacity of breast cancer survivors, groups and organizations in Newfoundland and Labrador to work in partnership to implement information dissemination and support strategies in the province.

Objectives:

to stabilize the provincial partnership (network) at a time of transition from the regional Atlantic Breast Cancer Information Project to a self- reliant provincial network.
to increase the capacity of the newly established provincial partnership to respond to the community and individual needs of the people of Newfoundland and Labrador.
to develop a strategic plan for providing information and support to women, their families and caregivers transition from the regional Atlantic.
to implement the strategic plan and build it into a sustainable program.
to give priority to providing information and to offer support to women at the time of diagnosis with breast cancer.

Target Audience:

both newly diagnosed women, and those living with breast cancer, their families and caregivers
physicians
cancer care organizations and policy makers.

Key Activities:

awaits a specific and detailed workplan to be developed by the provincial partnership, but may include:
to enhance communication amongst the members of the provincial partnership.
to development of a strategic plan for the sharing of breast cancer information and increasing access to breast cancer support and services in Newfoundland and Labrador.
to implement and evaluate the delivery of information to all newly diagnosed women in the province.

Potential Challenges:

distance
literacy
socio-economic level
cooperation of physicians and surgeons

Intended Outcomes:

strengthen the capacity of the recently formed provincial committee in Newfoundland and Labrador to share knowledge and expertise in order to meet the informational and support needs of women diagnosed with breast cancer throughout the province.
build on the work that has already been carried out to develop an effective information delivery strategy for newly diagnosed women by taking the strategies to the implementation and evaluation stage.
identify and begin to fill the information and support gaps for women in hard-to- reach groups, those who have metastatic disease, and those who wish to use complementary therapies, through the development of an Integrated strategic plan.

For further information, contact: Jon Church, PhD

Development of a Nova Scotia Breast Cancer Network

Sponsor: Nova Scotia Breast Screening Program

Partners: The Nova Scotia Breast Screening Program, The Pink Rose

Goal: Identify and develop a strong, viable, sustainable Provincial network of breast cancer survivors, support groups, support services, and those with a vested interest in breast cancer and breast health.

Objectives:

Identify stakeholders
Create ways to interact
Contact the stakeholders with information about the project
Identify what is working and what is not working in the Province
Identify key issues
Plan Regional meetings for stakeholders
Plan with Regional stakeholders the best strategic plan to use
Develop a plan of sustainability

Target Audience:

Survivor groups, community groups, government agencies, care givers, special interest groups, hospital services, large ethnic populations, large religious populations, Regional Health Boards, Cancer Care Nova Scotia, and Service Groups.

Key Activities:

Identify stakeholders
Develop an information and question package for primary contact
Plan and hold Regional meetings with input from stakeholders
Elect two delegates from each Regional meeting to be key facilitators in their areas.
Develop a plan for sustainability.
Evaluate project on an annual basis
Share with stakeholders on a regular basis, information obtained as required

Potential Challenges:

Finding the time to complete the project before the March 31 deadline.
Buy in from the potential stakeholders that this is a worthwhile project.
A visual, tangible outcome
Maintaining the momentum
Future funding

Intended Outcomes:

A viable sustainable network of those with an interest and commitment to the betterment of those dealing with a diagnosis of breast cancer.
A better sense of connection to those in the other areas of the province
An accurate overview of just what is available and what needs to be made available across the province.

Contact person:
Dianna Schreuer
Patient Navigator, Nova Scotia Breast Screening Program
QE II Health Science Center
1278 Tower Rd. Room 3036 Dixon Building
Halifax, Nova Scotia B3H 2Y9
Phone: 902-473-3680

Breast Cancer Information and Support in PEI

Sponsor: Canadian Cancer Society, PEI Division

Partners: PEI Breast Cancer Information Partnership, PEI Division of the Canadian Cancer Society

Goal: To increase the capacity of Prince Edward Island breast cancer survivors, groups, organizations and institutions to work in partnership to identify breast cancer information and support needs in the province, particularly for women who have been recently diagnosed, and to develop a joint plan of action to ensure that these needs are met.

Objectives:

To broaden the membership of the PEI Breast Cancer Information Partnership in order to improve the collaboration on projects related to breast cancer information and support.
To develop a method to assess the effectiveness of the Sunflower Seeds of Knowledge Kit and its delivery system.
To identify gaps in information and support and to develop priorities for further action.
To develop a strategic plan for coordinating the delivery of information and support for individuals with breast cancer and their families.
To secure finding for the work of the PEI Breast Cancer Information Partnership

Target Audience:

Individuals with breast cancer and their families
Providers of information and support.

Key activities:

Contacting representatives of groups and organizations involved in providing breast cancer information and support who are not currently represented in the PEI Partnership.
Meeting with organizations, institutions and individuals involved in the delivery of the Sunflower Kits to find an effective way of assessing the effectiveness of the kits.
Developing the tools to assess physician and patient satisfaction with the kits, to find out if modifications are required, and to establish how well the distribution methods are working.
Holding a Provincial Networking Workshop that will enable breast cancer survivors and representatives of organizations, agencies and institutions involved in the breast cancer to identify information and support needs at various stages of diagnosis and treatment and to clarify where gaps and/or duplications exist.
Developing a joint plan of action based on the discussions at the Provincial Networking Workshop.
Seeking sustaining funds and/or in kind support, using the strategies developed in the " Atlantic Breast Cancer Fundraising Handbook".

Potential Challenges:

Coordinating the activities of the Partnership, using very committed, yet very busy, volunteers.
Seeking funding for the continuation of work of the Partnership.

Intended Outcomes:

An enhanced partnership with increased capacity to share information within the PEI breast cancer community.
A greater understanding of the information and support needs of these living with breast cancer in PEI.
A method of assessing the effectiveness of the Sunflower Seeds of Knowledge strategy and some preliminary information about its impact.
New sources of sustaining funds for the work of the partnership.

For further information:

Eileen Fulford,
Chair, PEI Breast Cancer Information Partnership
33 Bonavista Avenue,
Stratford PEI
C1b 1L3
Tel. (902) 569-4475
Fax. (902) 569-5457

Vicki Francis
Executive Director, Canadian Cancer Society,
1Rochford Street, Suite #1,
Charlottetown, PEI
C1A 9L3
Tel: (902) 566-4007
Fax: (902) 628-8281

Towards ideal toll-free breast cancer information and support service(s) - Phase 2

Sponsor: Canadian Cancer Society

Partners:

Breast Cancer action - Saskatchewan
Canadian breast Cancer Foundation
Canadian Breast Cancer Network
Canadian Cancer Society
Fondation québécoise du cancer
The Hope Breast Cancer Information and Resource Centre
North West Territories Breast Health/Cancer Action Group
Réseau québécois pour la santé du sein
Willow Breast Cancer Support and Resource Services
Health Canada

Goal: Working collaboratively to define ideal toll-free service(s) for breast cancer information and support in order to respond to the needs of callers.

Objectives:

To review and accept Phase I recommendations.
To explore the implications of the models identified in Phase I and decide which model to implement.
To develop and pilot an inter-agency triage process for calls received by project partners.
To explore a collaborative marketing plan.
To develop an evaluation plan for Phase II.

Target audience:

Canadians personally affected by breast cancer

Key activities:

Build consensus within organizations currently providing services.
Identify issues from phase 1 that affect partnership organizations.
Develop triaging process.
Pilot triage process.
Develop a collaborative marketing plan .
Evaluate the pilot project.

Potential challenges:

There have been changes in membership of the Working Group, so a first step is to refocus the project and confirm commitment to the project

Intended outcomes:

Enhanced awareness of existing toll-free breast cancer information and support services
Enhanced communication between providers of breast cancer information and support.
Referral process between organizations that enables women to reach the service most able to meet their needs.

For further information, contact:

Eleanor Nielsen,
Senior Program Consultant
Canadian Cancer Society
10 Alcorn Avenue, Suite 200
Toronto, ON M4V 3B1
(416)961-7223 x321

Virtual Community Feasibility Project - Building Capacity for Tomorrow

Sponsor: Ontario Breast Cancer Information Partnership

Partners: Ontario Breast Cancer Information Exchange Partnership together with the Canadian Breast Cancer Foundation, Canadian Breast Cancer Network, the Canadian Cancer Society and Health Canada.

Goal: To conduct a national feasibility project on the use of information technology and the application of this tool to the concept of an Internet-based, virtual community for breast cancer information and support.

Objectives:

To identify and propose models for the development of an Internet-based virtual network using information technology to strengthen networking and collaboration between and among local, provincial and national stakeholders.
To complete an environmental scan and comprehensive summary of existing virtual networks, and the policies and procedures, risk management, training, funding and technical issues, and proposed solutions.
To prepare a final report and recommendations for future actions regarding a virtual community for breast cancer information and support.

Target Audience:

Three populations will be targeted in this project:

individual women at risk of development breast cancer and those living with breast cancer,
local, provincial/territorial and national agencies; organizations involved in the dissemination of breast cancer information and support, and
Internet technical experts, policy experts, and potential funders.

Key Activities:

The key activity for this project is gathering information about establishing and maintaining a virtual community that would involve agencies, organizations and individuals concerned with breast cancer. The information will be gathered using various approaches: surveys, interviews and focus group type meetings.

Potential Challenges:

The world of information technology is complex and changes occur rapidly. Stakeholders in breast cancer information including a wide range of participants from very large institutions to small "grassroots" groups and individuals. Challenges exist in making certain all of these voices are heard and then discovering a model that will allow such a range of stakeholders to become an effective virtual community.

Intended Outcomes:

The final report from this project will include a description of the issues and challenges stakeholders perceive in establishing a virtual community for breast cancer information and support, and suggestions for resolving those issues. In particular, the report will include.

identification of existing virtual community frameworks
potential for linkage and/or adaptation of existing networks
risk management concerns
technical, training and short/long term fiscal requirements for implementing such a system.

The information gathered from this project will assist in decision-making and priority setting for the development of an information technology based system tool for information exchange and support in Canada, a virtual breast cancer community.

Contact Name:

Margaret Fitch, PhD

Responding to Diversity Phase II

Sponsor: Willow Breast Cancer Support & Resource Services

Partners: Pilot project being carried out in conjunction with the Hispanic Development Council. An Advisory Committee is also being established to oversee the project with representatives from diverse communities.

Goal: To meet the breast cancer information and support needs of women from diverse communities through support from trained breast cancer survivors.

Objectives:

The project has broad range of objectives to be carried out through a targeted pilot project and through specific initiatives within the organization.

The objectives include:

sensitivity training for board, volunteers and staff;
training for multicultural support group leaders;
translation of Willow information materials;
expand collection of information materials in other languages intended for lay audience;
investigate cost and viability of interpreter services for reception services;
expand the representation of women from diverse ethno-cultural communities in Willow activities;
provide breast cancer information and support services to women in the target community.

Target audience:

Primary target audience is the Spanish-speaking community, with efforts made to reach Hispanic women in all parts of the country. Additional ethno-cultural communities will be targeted for inclusion in support group training and sensitivity training . Linguistic groups to be included in project include Chinese, Italian, Portuguese; women of colour represents another target group.

Key Activities:

A number of the activities are still in the planning phase but they include:

a training workshop for multicultural support group leaders;
a sensitivity training workshop for board, volunteers and staff;
volunteer recruitment for Willow committees to reflect diversity at all levels of the organization;
translation of information display card into several languages;
translation of information materials into Spanish;
breast cancer awareness presentation to agency members of the Hispanic Development Council and other community organizations;
production of a video in Spanish;
compilation of a data base of agencies and individuals serving the Hispanic community;
collect and organize numerous books, pamphlets, articles, audio-visual materials on breast cancer in Spanish;
identify web site and other on-line sources for Spanish-language information;
establish an Advisory Committee to oversee the project and establish community links.

Potential Challenges:

The project faces both internal and external challenges including:

limited time availability of peer support volunteer speaking other languages;
short and long-term budget implications of diversity;
linking diversity project to Willow's efforts to expand French-language services and to expand services nationally;
receptiveness of ethno-cultural communities to Willow services.

Intended Outcomes:

By the end of the project Willow hopes to have: tested an outreach and service model; established links with agencies serving ethno-cultural communities; prepared board and staff for future of diversified services; be able to respond to information and support needs of women speaking Spanish.

Contact:

Margaret Samaroo

Breast Cancer Partners Advisory Committee: Provincial and Regional Mission

Sponsor: Réseau d'échange d'information du Québec sur le cancer du sein [Quebec breast cancer information exchange network] - REIQCS - October 1999

Partners: Community organizations, hospitals, government and institutions involved in breast cancer prevention at the local, regional and provincial levels.

Goals:

Regional Advisory Committees: Tour of Quebec regions

To exchange information with service providers in the regions on their achievements, expectations, and projects for the regional planning of breast cancer prevention work.
To present REIQCS and its projects.
To encourage synergy among organizations in the region.
To set up an advisory committee in each region to meet information and support needs.
To appoint a person to represent the region on the "REIQCS Advisory Committee."

Provincial Advisory Committee: REIQCS Advisory Committee

To provide service providers with a neutral ground where they can listen and be heard.
To circulate information.
To identify organizations' needs and expectations.
To work with them on developing tools and services to meet those needs.
To propose projects to REIQCS.
To involve new partners in REIQCS projects.
To prevent duplication.
To mobilize organizations.
To harmonize breast cancer prevention work.
To appoint a Quebec representative to sit on Health Canada's future "Community Capacity Building National Advisory Group."

Target groups:

Community organizations, hospitals, government and institutions involved in breast cancer prevention at the local, regional and provincial levels.

Activities:

Regional Advisory Committees: Tour of Quebec regions

To hold a series of consultative meetings, lasting about four hours each, in the Quebec health and social services region where the organizations concerned will participate.

Provincial advisory committee: REIQCS Advisory Committee

To bring together six times a year, from September to June, representatives of local, regional and provincial organizations involved with breast cancer prevention (e.g., women's groups, regional health and social services boards, self-help groups, Department of Health and Social Services, professional associations, breast cancer organizations, associations of women with breast cancer).

Potential challenges:

Regional Advisory Committees: Tour of Quebec regions

To evaluate the importance of facilitating communication and partnership among the organizations, in particular Quebec self-help groups.

Provincial Advisory Committee: REIQCS Advisory Committee

To be constantly on the lookout for new organizations involved with breast cancer prevention.
To identify a person representing Quebec self-help groups.
To find the necessary funding for relevant projects suggested by Advisory Committee members.

Anticipated results:

Regional Advisory Committees: Tour of Quebec regions

Encourage the formation of a dynamic regional advisory committee that will ensure its own long-term existence. If an oncology or breast cancer screening committee already exists in a region, work in partnership with it or join it by working under an integrated network model.
Make a discussion and consultation forum available in the various Quebec regions.

Provincial Advisory Committee: REIQCS Advisory Committee

Identification of a strategy for improving the dissemination of information and support services in Quebec.
Facilitate cooperation among "competing" organizations.
Harmonize with initiatives proposed by the Department of Health and Social Services, such as the Quebec Breast Cancer Program.

Cancer du sein et femmes des communautés ethnoculturelles (breast cancer and women in ethnocultural communities)

Sponsor: Alliance des Communautés Culturelles pour l'égalité dans la Santé et les Services Sociaux

Partners: ACCÉSSS and community organizations whose mission relates to problems having to do with cancer. Some of them are support groups affiliated with specialized hospital services (Lumi-Vie, OMPAC), while others are independent organizations (Multi-Ethnic Association for the Integration of Handicapped People of Quebec - AMEIPHQ, CARI St-Laurent).

Purpose of project:

To improve the living conditions of women in the ethnocultural communities affected by breast cancer, through provision of information, support and intervention that reflect their needs.

Project objectives:

To provide these women with appropriate support , we propose that certain actions be taken (in two stages, only the first of which is the subject of this project).

Objectives of first stage:

Identify the women's needs and the existing resources
Analyse the adequacy of the available resources in relation to the identified needs.

Objective of second stage:

Make the stakeholders in the community organizations and the health system more aware of this specific clientele's reality, through information and training sessions.

Target groups:

Two ethnocultural communities: Romanian and Haitian women affected by breast cancer (have had cancer, are in treatment, or have been newly diagnosed).

Major activities:

Organization of discussion groups and individual interviews to identify the women's needs; inventory of available resources; analysis of data collected from the discussion groups and resources in the community; production of a status report presenting these data.

Priorities relating to improvement of the community capabilities which are the subject of the project:

Establishment of co-operation and networking, since the project encourages establishment of collaborative links among the community organizations and the institutions in the system: support, information and advocacy, in particular projects aimed at meeting survivors' needs, because the project is intended to help women gain a better knowledge of the resources and of their rights in the health field; collective projects in which the community can be defined in terms of geography, ethnic group, religion, gender or other factors (The project looks at these factors: the community is defined on the level of Montreal and the Montreal region, includes women in the ethnocultural communities who have a variety of religions); projects that can be used as is or that can be adapted for use elsewhere in the country. Although the project targets Montreal and the Montreal Region, we believe that some of its elements (the purpose, the project objectives, the three types of activities planned, and the anticipated results) could be used as models for other initiatives elsewhere in the country.

Targeted results:

Better knowledge on the part of the health system of the needs of women in the ethnocultural communities who are affected by cancer; greater empowerment for these women by increasing their knowledge of the existing resources; and encouraging adaptation of the system's services to meet these women's specific needs.

For more information, contact:

Ms. Rose-Marie Mayetela,
Director General of ACCÉSSS
(Alliance des communautés culturelles pour l'égalité dans la santé et les services sociaux)

Collaboration and Partnership: Planning for Manitoba's Breast Cancer Information and Support Needs

Sponsor: Hope Breast Cancer Information and Resource Centre, Manitoba Breast Cancer Advisory Council

Partners: Hope Breast Cancer Information and Resource Centre, Manitoba Breast Cancer Advisory Council

Goal:

To enhance and improve access to breast health / cancer information and support for residents of Manitoba by fostering collaboration and partnerships amongst a range of stakeholders across the province.

Objectives:

To identify and invite participation of local stakeholders / partners from across Manitoba.
To inform stakeholders about provincial and national initiatives regarding breast health / cancer programs and services.
To foster the development of plans for the coordinated dissemination of breast health / cancer information and support for communities throughout Manitoba.
To result in a Provincial Network consistent with Health Canada's proposed Model for National Collaboration.

Target audience:

Individuals from a wide array of agencies, organizations, and groups who provide a local breast health / cancer service. The service may be focused on information, dissemination, support provision, or a combination of the two. The participants may include community-based agencies (non-profit and volunteer) and institutionally based agencies.

Key activities:

Establish workshop planning committee with membership from groups / agencies with provincial focus and/or breast health / cancer focused services.
Identify and recruit new and existing stakeholders from across the province by: conducting an "environmental scan" of existing breast care services:
developing and distributing a breast care assessment questionnaire across Manitoba;
collaborating with Public Health Nurses, Health Educators, and each Regional Health Authority Advisory Board to develop a process for identifying and inviting stakeholders
Develop materials and a process for inviting participation
Plan and deliver a two day workshop that involves:
Day one: Breast Health / Cancer Update:
1. information sharing re surveillance/monitoring, education, research initiatives, community capacity building, national collaboration, Hope Breast Cancer Information and Resource Centre, and the Comprehensive Breast Program;
2. Description of Provincial Network and National Advisory Committee Role (as per Model for National Collaboration) and
Day two: Conduct a facilitated workshop to:
1. identify community needs, priorities, and strategies to improve provision of information and support; and
2. discuss development of a provincial network and national collaboration.

Potential challenges:

Ensuring representatives from across province due to geographical challenges.
Gaining consensus re priorities given great variability of services / needs for various regions of province.
Completing project with tight time-lines.
Ensuring representatives from a range cultural groups.

Intended outcomes:

Stakeholders from across Manitoba will have the opportunity to participate I the planning for the province's breast health / cancer information and support strategies.
There will be increased linkages between stakeholders involved in breast health / cancer throughout Manitoba.
Manitoba will participate in a collaborative process resulting in the establishment of a Provincial Network for provision of breast cancer information and support as recommended in the Community Capacity Building proposed Model for National Collaboration.
The existing Manitoba Breast Cancer Advisory Council member will be instrumental in recommending the appropriate provincial network member to sit on the Network Committee (as per established representational criteria).

For further information contact:

Kathy Thomson
Director - Hope Breast Cancer Information and Resource Centre

A Saskatchewan Breast Cancer Network

Sponsor: Breast Cancer Action Saskatchewan

Partners:

All groups concerned with breast cancer in Saskatchewan will ultimately be involved in the Network. The following groups are committed to participating in the project and or providing a variety of supportive services to the project: Saskatchewan Cancer Agency; U of S, Continuing Medical and Nursing Education, Saskatchewan Health, Health Promotion Branch, Prairie Women's Health Centre of Excellence, Canadian Cancer society-SK division, Saskatchewan Registered Nurses' Association, Saskatchewan Seniors Mechanism, Saskatchewan Women's Agricultural Network, Hope Cancer Help Centre, Inc., Saskatchewan Association of Social Workers, and Saskatchewan Women's Secretariat.

Goal: Establish a breast cancer network in Saskatchewan

Objectives:

to bring groups and organizations, who are concerned with timely access to support, education, and information for persons affected by breast cancer together to articulate the vision, mandate, goals and objectives for the network
establish a steering committee to: refine and carry out the work of the network, communicate with network partners, organize teleconferences, prepare strategic plan for presentation and revision by all network partners
determine and implement a process for selection of the Saskatchewan representation to the Health Canada Community capacity Building Advisory Group
collaboratively develop a strategy to provide sustainable access to timely support, education, and information for persons affected by breast cancer.
develop an ongoing evaluation

Target Audience:

person's affected by breast cancer and organizations and groups concerned with the educational, information and supportive needs of these people. The partners identified above are examples of such groups and organizations.

Key Activities:

two day network workshop
determine mission, mandate, goals of network and promote same
develop and implement a communication pathway for network members
establish criteria for selecting representative to HC CCB Advisory
ongoing communication, planning by steering committee
teleconference(s)
implement evaluation plan

Potential Challenges:

distances, small population
ongoing funding
Health District programming structure and administration varies
ensuring identification and involvement of all groups concerned

Intended Outcomes:

all potential partners represented in the network
commitment to a common vision, mandate, goals and objectives by the network partners
effective and ongoing communication among the network partners and the breast cancer community
a process for selection of the network representative
a strategic plan for sustainable access to breast cancer information education , and support in Saskatchewan
an ongoing evaluation process
ensuring continuity

For further information contact:

Breast Cancer Action Saskatchewan

Diana Ermel President
(306) 586-9191 or (306) 798-0136

Peg Schmidt Project Coordinator
458 Wakabayashi Cres. Saskatoon, S7K 7L7
Phone: (306) 931-9632 Fax: (306) 955-7108

A Provincial Strategy for the Coordinated Development and Dissemination of Breast Cancer Information and Support Services

Sponsor: Breast Cancer Infolink, Alberta Cancer Board

Partners:

Breast Cancer InfoLink / Alberta Cancer Board
Canadian Cancer Society, Alberta/NWT Division
Canadian Breast Cancer Foundation (Alberta Chapter)
Screen Test: Alberta Program for the Early Detection of Breast Cancer
Breast Health Education Coalition of Calgary
Hope Cancer Support Association of Alberta
The Grace Women's Breast Health Program
Reach to Recovery Breast Cancer Support Program
The Hope Foundation
Young Women's Breast Cancer Support Program
The Regional Health Authorities of Alberta

Goal: To develop a network of organizations committed to ensuring that information about breast cancer and support services are available to all people in Alberta.

Objectives:

To establish a framework for partnership and collaboration among stakeholders, including breast cancer support groups
To conduct an environment scan of breast cancer information and support services in Alberta
To develop a strategic plan for providing breast cancer information and support services to women, their families, and caregivers
To develop a communication strategy for information exchange

Target Audience:

Organizations and individuals who are involved with the development and dissemination of breast cancer information and support services. This project will serve as a mechanism to link all the local breast cancer stakeholders together at a provincial level, while at the same time nurture the community capacity building efforts at the grassroots level. Together, our members will work to improving access to information about breast cancer and support services for women, their families and health care providers.

Key Activities:

Objective #1: To establish a framework for partnership and collaboration among stakeholders, including breast cancer support groups

Through the establishment of an Advisory Panel, articulate a shared vision for the provincial network
Develop the network structure and capacity to facilitate partnership and collaboration
Remove social and environmental barriers which may impede partnership and collaboration
Enhance environmental support and resources

Objective #2: To conduct an environmental scan of breast cancer information and support in Alberta Cancer Board

Gather existing research to determine scope of the problem
Conduct primary research through an environmental scan
Communicate process and outcomes in a meaningful way to assist in mutual decision-making

Objective #3: To develop a strategic plan for providing breast cancer information and support to women, their families, and caregivers

Plan a workshop on strategic planning surrounding information and support in Alberta
Circulate proceedings for workshop to workshop participants & other stakeholders

Objective #4: To develop a communication strategy for information exchange

Implement a proactive, two-way communications program
Establish and nurture effective relationships with breast cancer stakeholders
Develop communication strategies to support the network

Potential Challenges:

In smaller communities, many support programs are broader than breast cancer. They tend to be a Living with Cancer group or Women with Cancer. It is important to recognize these groups.
There is a trend to a more holistic approach in health issues. For example, many organizations are moving towards a Women's Health framework (as opposed to site-specific). This is especially true for women of different cultural backgrounds.
An ongoing challenge will be to move forward - from discussion to action. It is important to recognize that many organizations are faced with limited resources (human, financial).
In many organizations there has been a large turn-over of staff and volunteers.

Intended Outcomes:

The key question to consider, "Did the development of a provincial network contribute to any of the following outcomes?"

Integration and coordination of information and support services
Equity of access and availability addressed
Number of organizations involved
Number of local (community) networks developed

Breast Cancer in the NWT: Building Capacity for Community Support and Information

Sponsor: NWT Breast Health/Breast Cancer Action Group

Project Partners:

NWT Breast Health/Breast Cancer Action Group and the Status of Women Council of the Northwest Territories

Goal:

Using a community development approach:

To facilitate increased networking and collaboration among individuals, groups and agencies with a role to play in breast cancer
Information and support.
To facilitate an increase in awareness and understanding of breast cancer among women, health care providers, and others, in order to create a greater climate of support for women and families personally affected.

Objectives:

Hire a breast cancer community development facilitator
Build links with individuals, groups and agencies at the community, regional and territorial level, who have an interest or role in breast cancer information and support.
Expand the existing NWT Information Project Advisory Panel, so that it becomes an effective vehicle for networking and collaboration among all NWT groups with a role to play in breast cancer information and support.
Bring stakeholders together to develop a strategic plan to address identified needs and gaps regarding breast cancer information and support.
Work with existing peer support persons, other survivors and health care providers to expand the availability and level of support at all stages from pre-diagnosis to post-treatment.
Facilitate the availability of breast cancer information in communities, to increase individual and community understanding of breast cancer.
Be a resource for the development of community and/or regional initiatives regarding breast cancer information and support facilitate the development of a network of community contacts able to provide information on breast cancer to others in their community and to be a link to other sources of information and support.

Target Audience: NWT women and women affected by breast cancer and their families. The project will also work with local health care providers, regional health boards, the NWT Department of Health and Social Services, women¹s groups, the Canadian Cancer Society NWT Unit, First Nations organizations, and others

Key Activities:

Hire facilitator; expand community/regional links; expand existing Panel; hold strategic planning session Nov. 20/99; link with survivors around needs of women and families from pre-diagnosis onwards; support community initiatives; provide information.

Potential Challenges:

Geographic distances, telecommunications, language barriers, many other health concerns demanding attention of individuals/groups/communities.

Intended Outcomes:

A broadly representative Panel or Committee that is actively networking and collaborating regarding breast cancer information and
support in the NWT.
Identification of needs and priorities for the NWT, which are brought forward to the National Advisory Group, and a strategic plan to meet the needs.
Increased local, regional and territorial capacity to respond to the breast cancer information needs of women, and the information and support needs of women personally affected by breast cancer and their families.
Increased community understanding of breast health and breast cancer.

For further information contact:

Marsha Argue, Chair, NWT Breast Health/Breast Cancer Working Group

Alliance for Breast Cancer Information & Support (BC & Yukon)

Sponsor: Canadian Cancer Society, BC & Yukon Division, BC Cancer Agency

Partners: (including but not restricted to)

British Columbia Cancer Agency
British Columbia Women's Hospital and Health Centre
Canadian Breast Cancer Foundation, BC & Yukon Chapter
Canadian Breast Cancer Network
Canadian Cancer Society, BC & Yukon Division
First Nations Breast Cancer Society
General Surgeons in BC & the Yukon
Health Canada
Individuals with a history of Breast Cancer
Life Quilt for Breast Cancer Society
Pharmaceutical Companies
Support Groups, BC and Yukon
Vancouver Hospital and Health Sciences Centre
Women's Health Bureau, BC Ministry of Health
Yukon Navigator Project

Goal:

The main goal of this project will be to establish and maintain an effective network between individuals and organizations concerned with breast cancer in BC and the Yukon

This goal reflects the main work of the proposed Alliance. The importance of having all visible stakeholders in various aspects and areas of the Alliance will in turn prevent duplication of resources and lead to a united force in the field of breast cancer information and support. With the network involving all types of stakeholders, it is anticipated there will be a reduction in the need for groups to externally deal with issues on their own. As a collective group with varying skills, resources and expertise, the Alliance will be able to become a leader in information and support for people living with breast cancer, their families and friends.

Objective:

The objective of this project will be to maintain cohesive links between community, region, provincial and national bodies.

The development of a breast cancer networking Alliance will ensure that people living with breast cancer, their families and friends, in BC and the Yukon will have resources and support available to them.

Key Activities:

To set into action the infrastructure of the Alliance during the first year and to maintain the value added resources established by the Breast Cancer Information Project.

The Alliance will encompass the community of stakeholders in the dissemination of information and support throughout BC and the Yukon. Regional Coordinating Bodies (RBC) will enhance the capacity of local communities within BC and the Yukon. The Regional Coordinating Bodies will have an important role in identifying community-specific needs and gaps but also community-specific solutions and opportunities to enhance breast cancer information and support. They will serve to bring key people living with breast cancer together in each region of BC and the Yukon.

The Central Coordinating Body will include a representative from groups such as: Canadian Cancer Society, Canadian Breast Cancer Foundation, Canadian Breast Cancer Network, British Columbia Cancer Agency, British Columbia Ministry of Health, British Columbia Children and Women's Hospital, Pharmaceutical Companies, Vancouver Hospital, First Nations Breast Cancer Society, Life Quilt for Breast Cancer Society, the Yukon Navigator plus representation from all the regions and the Alliance Coordinator.

The diversity of stakeholders within the Central Coordinating Body will strive to be inclusive and consider the ethnic, socio-economic, geographic, age, and literacy diversity of BC and the Yukon. At the regional level each group may be different as the mix of people geographically differs greatly. We anticipate volunteers living with breast cancer, health care providers, and community leaders will become integral parts of the Alliance's network at the community and regional level.

Each region, (Vancouver Island, Greater Vancouver, Fraser Valley, Interior, Kootenay, Northern BC) and the Yukon, will have two representatives on the CCB with at least one representative from each region being a person living with breast cancer. Membership for the Regional Coordinating Body will vary depending on the unique attributes of each region. Each Regional Coordinating Body will determine the membership and structure that meets the needs and initiatives of the communities in their region but must include both people living with breast cancer and health care providers. The Regional Representatives will act as key people for their region.

Potential Challenges:

Initial set up of Coordinating Bodies
Promotion
Sustainability
Evaluation

Target Audience:

The target audience will include a diverse community of stakeholders and persons living with breast cancer, their families and friends (type of stakeholder, geographic location, age, socio-economic status, literacy levels, ethnic). The project may serve as a model for use in other women's health or cancer issues.

Intended Outcomes

Collaborative Network with a broad inclusive reach
Reduction of Duplication
Increased access to information
Enhancement of support services

For Further Information contact:

Alliance Coordinator
Deborah Rusch
565 West 10th Avenue
Vancouver BC V5Z 4J4
phone: (604) 675.7124
fax: (604) 879.9267


Last Updated: 2003-12-29	Important Notices