Patients and families wonder how to get involved in advocacy. We want to help solve the problems we may have encountered on our cancer journeys, or share our aspirations for better care. We want to give back to the system, but we are not sure where to start. We do not know what degree of involvement with the system is welcome or appropriate.
The International Association for Public Participation (IAP2) has a framework to help us understand how patient engagers might respond to patient advocates. At the heart of IAP2’s core values is the idea that those affected by a decision have a right to be involved in the decision-making process. For meaningful advocacy, engagers should seek out, inform, and provide feedback to those affected by a decision. They should facilitate public participation in problem definition, solving, and decision-making.
The IAP2 articulates five levels along a spectrum of public participation:
Inform. At this level, the decision-makers promise to keep the public informed. The hope is to provide the public with balanced and objective information to assist them in understanding the problem. In the cancer world, this takes the form of websites and fact sheets. We can learn about the issues that affect us, such as debates regarding palliative care funding or screening programs.
Consult. The system promises to obtain public feedback on a problem and a decision. At this level, the system will inform cancer patients and families, acknowledge their concerns and aspirations, and provide feedback on how public input influenced the decision. Examples of this kind of engagement include inviting patients to participate in focus groups, surveys, or public comment forums.
Involve. The system works directly with the public throughout a process, ensuring that public concerns and aspirations are consistently understood and considered. Feedback on how the public input influenced the decision is provided. These efforts require slightly more time from both engagers and advocates, and include such examples as workshops and deliberate polling.
Collaborate. This level requires partnership between patient engagers and patient advocates. The system partners with the public in each aspect of the decision, including development of alternatives and identification of the preferred solution. Collaboration is a continuous process, not a “one-off,” and requires longer-term commitment from both sides. In the cancer world, this can take the form of Patient Advisory Councils in hospitals, or patient participation on government task forces or expert working groups.
Empower. At this level, the final decision-making is placed in the hands of the public. The commitment of the engagers is to implement what the public decides. This is rare in the cancer world, but might take the form of public referendum on a relevant political issue, or a citizen jury in a public trial.
So how does a cancer patient or a family member find a way to start with advocacy? Going forward, this advocacy blog will describe various opportunities at each of the various levels. One good jumping-off point: join the national association linked with your kind of cancer (e.g., the Leukemia and Lymphoma Association). These organizations are in a good position to start you at the first level by informing you of key issues. Also, these organizations take part in broader advocacy initiatives. For example, the Canadian Cancer Action Network (CCAN) is comprised of approximately 113 such member organizations; one of their mandates is to embed patient and caregiver perspectives into the cancer control system along IAP2 principles.
There are many out there who seek to engage patients and hear their voices. There are many patients and caregivers out there bursting to be advocates for better care. Patient Engagers can meet Patient Advocates along that river of IAP2 opportunity. With willing hearts, both sides can reach the sea.
Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years. She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers . Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015. Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo. She is currently in treatment for a recurrence of her colorectal cancer.