Support for Cancer Patient and Survivor Voices

The Canadian Cancer Survivor Network (CCSN) was launched on January 31, 2012 with our first Board Meeting after almost one year of consultation with stakeholders; an environmental scan; input from patients and survivors across Canada; building an organizational framework, including mission and vision; drafting and submitting papers of incorporation as a non-profit group; development of a website; and a process of consultation with funders.

A group of cancer survivors, their families and friends, and concerned individuals from the wider community are worried about diminishing cancer advocacy activities undertaken by Canadian groups, leading to fewer opportunities for a voice and involvement in cancer care decision-making for patients and survivors.

We would all like to reach the day when cancer patients and survivors are included in any and all decision-making committees, commissions, task forces, research institutes, government agencies and any other bodies discussing and implementing policy about cancer care. The Canadian Cancer Survivor Network will work collaboratively with other groups to ensure that this happens. We will also work on public policy issues that impact optimal cancer care.

Dr. Ellen Warner, medical oncologist at Sunnybrook Health Sciences Centre, professor of Medicine at the University of Toronto and founder of the PYNK Breast Cancer Program for young women, told us:“I don’t know whether there is LESS advocacy than before, but the need is infinitely greater as the cost of new cancer drugs has risen exponentially and resources are being cut (for example there is no longer primary nursing at Sunnybrook or PMH [Princess Margaret Hospital], and this is having a huge negative impact on patient care). Ultimately what good is investing hundreds of millions of dollars in research in Canada if the drugs being studied are ultimately unavailable to most Canadians or if essential infrastructure is being eroded for all patients?”

The Canadian Cancer Survivor Network is:

• Soliciting partnerships with disease-specific cancer organizations, health care organizations, support group members, research institutions, and corporate and foundation partners interested in optimal patient care and patient centered care. We currently have over 25 partners and if your group would like to join us, email jmanthorne@survivornet.ca ,
• Establishing a regular series of educational opportunities through webinars, action groups, conferences, in-person training sessions in different parts of the country and eletters and other publications.
• Supporting and engaging in awareness and action involving policy and decision makers and other stakeholders, issuing action alerts, undertaking social media campaigns on our website, Facebook page, Twitter, and development of special apps for iphones.
• Conducting research and encouraging others to conduct research on ways to alleviate barriers to optimal patient care and follow-up and development of tools for enhanced medical as well as emotional, social, financial and spiritual aspects of life after cancer.

Board members include men and women with skills in grass roots organizing, community development, spiritual tools for cancer patients, the science of breast cancer, public policy, financial, business and project management, governance, marketing, fundraising, and social functions and special events.