Healthcare providers like myself are often called to be on working groups that seek to improve care delivery. We meet as a multidisciplinary team to develop guidelines, policies, and practice. In recent years, in response to the patient engagement movement, “patient advisors” have joined providers on such efforts. Now, I have been on both sides of the table: I have served as the cancer patient representative on several such committees. Those experiences have taught me a great deal about the role and value of cancer patient advocacy at the discussion table.
Many providers are uncomfortable with the notion of patient representation. They do not know what to expect. Here are five myths that I have encountered and combatted in my personal and professional experiences with advocacy. The truth can be reassuring.
Myth 1: Patients advisors will bog down the committee progress with their medical ignorance. Practitioners are often surprised to learn how much medical knowledge patient advocates actually have. Cancer patients and their families, as well as those with any chronic disease, often develop extraordinary awareness of the latest research and have an intimate knowledge of the technical aspects of disease management. Medical literacy is ideal, but it is not required: sometimes, the questions raised by patients can wake us up to the patient education paths we should develop.
Myth 2: Patients are too emotionally overwrought about their cancer experience to serve on a committee rationally. There is no denying that undergoing cancer as a patient or caregiver is an emotional experience. But this same emotionality can serve as a basis for passion, and passion can lead to intelligent dedication. Many patient advisory programs have in place a process for screening patient volunteers, to ensure they are ready for such work. For example, in Ontario, the London Health Science Centre has a Patient and Family Advisory Council which screens volunteers via interviews, and provides training to ensure clarity and competence in patient advisors.
Myth 3: Patient advocates have an axe to grind. Many patient advisors have had negative experiences in our systems. Some, like me, have even experienced extreme error and harm. It can make providers acutely uncomfortable to hear such narratives, and they can push away the lessons such voices have to teach. We think, “that person has an isolated case.” Even if this is true, there is still much to learn from harm narratives. Moreover, many patient advocacy programs have screening and training in place to ensure that those who come to the table are well able to balance their stories with the greater objective of improved care. For example, Patients for Patient Safety Canada has a careful vetting process to ensure that their volunteers – largely, those harmed or bereaved by medical error – are approaching the work with a constructive and conciliatory attitude.
Myth 4: Patient advisors will find the technical details boring. The kind of person who volunteers as a patient representative comes forward because they are interested. This video from Cancer Care Nova Scotia (yours truly is glimpsed!) has several patient advocates explain their reasons for joining highly technical working groups. As I said to someone trying to dissuade me from volunteering for such a group, “it is amazing how fascinating a disease becomes when it threatens your life.”
Myth 5: Patient advisors have nothing constructive to add. Patients come from other walks of life. Their experiences in the world outside healthcare not only add to our understanding, but can have very real practical benefits. Dorothy in the CCNS video was a teacher for over 30 years. She knows how to measure, evaluate and grade things continuously – so her experiences were an asset to a clinical measurement group she joined. Dave is an IT guru: he knows how to save and structure clinical outcome data. Brian is a businessman: he knows how to use social media to get the word out about patient education efforts. Cynthia is a journalist: she knows how to use narrative to move politicians and the public to action. Patient advisors come with a range of skills that can be enormous assets.
As a clinician, my first experience with having a patient at the working group table was an adult man with Down Syndrome. When I first heard he was joining us, I was unsure how would it would work. But having experienced it, I can say with conviction that I will never work another way. There is nothing like having a representative of the people you are there to serve to remind a clinician about the importance of better care. It dignifies the experience, and creates an atmosphere of dedication and respect for the cause. No matter how sophisticated, the patient presence reminds the practitioner of what is truly important.
Dr. Robin McGee (www.thecancerolympics.com, 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 25 years. Since entering remission, 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. In 2015, she was awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Her book The Cancer Olympics has won four literary awards, and was recently listed among the best 55 self-published books of 2015 by Kirkus reviews. Proceeds of sales go to cancer support programs. The Cancer Olympics is McGee’s first – and hopefully her last – memoir about her cancer experiences.