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Development of a Cancer Support Network OBCIEP Project Overview, September 2007

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Project Purpose
The Ontario Breast Cancer Information Exchange Partnership (OBCIEP) has been working to enhance the information and support needs of those affected by cancer since 1993. The present website project was instigated by previous work which showed that women affected by breast cancer are increasingly turning to the Internet for information. At the same time, the Internet can be a source of uncertainty and frustration. This project is aimed to help people with lung, breast, ovarian and prostate cancer with an Internet-based “hub” resource. Cancer survivors, caregivers, and several community partners are involved in evaluating the website. Project partners include the Canadian Cancer Society – Ontario Division, Lung Cancer Canada, the National Ovarian Cancer Association, the Thunder Bay Breast Health Coalition, Wellspring, and Willow Breast Cancer Support Canada.

To date:
A needs assessment was first conducted to learn about preferred types of information, when specific information and support is sought, and features and options that make an Internet site ‘work’. Data collection involved surveys and discussions among men and women affected by breast, lung, ovarian, or other cancers in eight locations in Ontario. Subsequently CancerSupportNetwork.ca. was created. Where possible the site is linking to reliable information and support sources that already exist, new content was created only where necessary. Those dealing with cancer are assisting by reviewing the website developments.

Next steps:
A wide menu of information and support options are offered by CancerSupportNetwork.ca. We have piloted peer-led support groups for breast cancer survivors, an online and a teleconference pilot. We plan to pilot more groups with ovarian and prostate cancer survivors. The groups are structured as follows:

  • One facilitator works with 4-6 participants
  • All groups are planned to ‘meet’ once per week for a minimum of 6 weeks
  • All facilitators and participants file impressions and/or comments after each session and are interviewed when the groups end
  • In keeping with the project goals to reach those underserved populations, those in rural or remote areas who have limited access to other support services will be approached to participate

A framework of the format of the 6-week peer-led groups and an evaluation process has been completed. These are flexible and may change depending on the facilitators involved. Priorities and next steps include working with community partners to help shape the format of the groups, recruit the facilitators and participants. The pilots will be evaluated by all partner groups with a view to adapting the teleconference and/online groups as part of support service program.

Conclusion
This is a work in progress. The expected result is an innovative accessible website that enables those affected by cancer to tailor information and support that is right for them, at the time it is needed. The project and report will be completed by March 2008.

Contacts:
Margaret Fitch, Ph.D., Odette (Sunnybrook) Cancer Centre, Toronto

Project Researcher/Coordinator: Sue Keller-Olaman, Ph.D., Hamilton

Project Coordinator: Kathy Thompson, Thunder Bay

Irene Nicoll, MBA, Ontario Breast Cancer Information Exchange Partnership, Toronto E-mail: irene.nicoll@partnershipagainstcancer.ca Telephone: 1-877-360-1665 ext 5778; Website: www.obcep.ca