When our involvement with the cancer system ends, many of us wonder how to give back. Some of us have had excellent experiences, and we want to ensure others do too. Some of us have had horrific experiences, and we want to prevent such harms from happening to others. Some of us have lost loved ones, and want to honour their lives by striving to bring about better and more responsive care. Some have a hunger for social justice, and want patients to be treated with fairness. Some of us are healthcare providers, and are frustrated by obtuse policies which compromise best care practices. We come together with many motives to improve the system.
So welcome to the inaugural post of the Cancer Knowledge Network Advocacy Section. My intent in this section is to promote attention to the kinds of issues that deserve our attention in Canada and the United States. For example Canada is troubled by unfair cancer drug policy, such that oral chemotherapies are funded differently across the various provinces. The lobby group CanCertainty is fighting for needed change. How can their efforts be showcased and supported? This section will profile the advocacy issues as well as their leaders.
Also, I hope to share the “how-to’s” of patient engagement. I have served on six different expert working groups aimed at improving national and provincial standards of cancer care and patient safety. This section will talk about how to become an effective (and sane) advocate for the issues that beset cancer patients. We will invite interviews and guest blogs from other patient leaders who lead the charge in promoting the patient voice.
Here is a sampling of the kind of topics we hope to cover:
- Patient advocacy organizations – where can the cancer patient or caregiver fit in?
- Five myths about patient advocates (for healthcare professionals)
- The patient narrative: how it can be a tool for advocacy
- Self-care and the patient advocate: how to stay sane while pushing for change.
- On the committee? Tips for patient advocates interfacing with government and healthcare representatives.
Of course, many readers will have ideas about what advocacy issues need to be addressed. In the spirit of raising the patient voice, leave a comment below for an opportunity to share about the advocacy matters that concern you.
My own passion for patient advocacy began when I was an underdog late-stage cancer patient desperate for best practice chemotherapy that was denied me in my own province. The fight went all the way to the Minister of Health. Also, my fervour regarding protecting others from diagnostic error arises from the travesty of medicine I experienced – diagnostic care so bad that the doctors involved were disciplined by their licensing board. My book, The Cancer Olympics, captures this harrowing story. Also, this 3-minute video by ColonCancer Answers shares why I have dedicated myself to patient advocacy.
What are my goals for the Advocacy section? I hope to stir the hearts of those touched by cancer – patients, families, friends – to reach for needed change. To find their voice, so they can speak their truth. To inspire my fellow survivors and caregivers to give back to the system by challenging it to greater heights. And, finally, to provide interesting and inspiring reading!
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.