This is part of our 'Spotlight' series, where we shed light on some of the amazing work being done by informed patients and family caregivers from across Canada.
Dr. Robin McGee is a registered Clinical Psychologist, author of the International Book Awards 2015 finalist, "The Cancer Olympics," and an active Patient Advocate in the area of advancing best practice treatment and care for cancer patients. We spoke with Dr. McGee about her patient experience and what drove her to become involved in improving the patient experience in her community and beyond.
How did you come to understand that the patient experience had to change?
Dr. McGee: In my own case, I had an extremely negative experience. I have had very positive experiences as well, but this one was negative. I saw four doctors – three family physicians and a general surgeon – in my search for an explanation for my rectal bleeding. Despite my immediate family history of colorectal cancer, all four of those doctors dismissed and belittled my symptoms. By the time my cancer was detected, it was stage IIIc, with only a 33% chance of survival.
When the College of Physicians and Surgeons of Nova Scotia investigated my case, many errors of practice and communication were uncovered. The errors were several: failure to communicate with me and with each other, failure to read the past electronic medical records or test results, failure to recognize the significance or urgency of my symptoms, failure to respond to my appeals for help, failure to triage my case appropriately, and providing me with inaccurate information about wait times and alternatives. Each of the four doctors assumed some other doctor would take responsibility for my case; so in the end, none of them did. Not one of them used the “c-word” with me at any time, profoundly disempowering me.
Due to the inappropriate care of these doctors, my cancer treatment was delayed by two years. Diagnostic work that should have taken 60 days by practice guidelines took 661 days. The quality of care was dangerously poor. Many would not have survived a diagnostic delay that long. After my experience, I became determined to make a difference in cancer care so others would not have an experience like mine.
Can you share with us some of the ways that you partner to improve care?
Dr. McGee: I have participated as a patient representative on several provincial and national initiatives aimed at improving standards of cancer care, including diagnostic care. I joined five working groups through Cancer Care Nova Scotia that focus on improving standards of treatment and care - there's a group on the development of standards of treatment for colorectal cancer; oversight of standards development, patient engagement, and patient education; but most important was a working group on improving guidelines for detection and diagnosis that make it clear which symptoms demand prompt attention.
I'm also involved in a research project that's looking into managing cancer-related depression, fear, pain, fatigue, etc. I'm also a peer support mentor and fundraiser on behalf of the Canadian Cancer Society, and a member of Patients for Patient Safety Canada.
You sound busy! Does your perspective as a provider contribute to your patient engagement work?
Dr. McGee: Yes, I do believe that I had a unique experience, and that I have a unique perspective because of my professional background. I'm a big believer in patient engagement in working groups and, in fact, in every level of healthcare. In the words of the Borg from Star Trek: “Resistance is futile!” Patients must be engaged in every level of healthcare because we need patient engagement. It's happening now more than ever - it's the way of the future - and I have had countless experiences in which the patient perspective changed the way a decision was made, or changed the sensitivity with which a service is delivered. For example, I've witnessed the improvement of communication pathways between providers, specialists, and cancer patients who are in situations similar to mine.
How did your book, The Cancer Olympics, come to fruition?
Dr. McGee: I wanted to put a human face to how poor cancer diagnostic care results in suffering. The Cancer Olympics is a story not only of a terrible diagnostic path, but it also sheds light on how the chemotherapy treatment for my kind of cancer was not available in my province. It was available in other areas of Canada, but not in Nova Scotia.
The community who had been supporting me through my harsh treatments turned to lobby the Ministry of Health to extend the formulary to include this best practice chemotherapy treatment. The province did eventually add this treatment to its formulary but it was too late for me to receive it. Also, the book relates my search for justice through the College of Physicians and Surgeons.
My book illustrates that patients have to advocate like crazy for their care, and for the care of others. I unpack my horrible care, what it feels like to suffer through cancer, my experience lobbying the government for a chemotherapy treatment, my search for accountability through the College, and the value of support from colleagues, friends, and loved ones. And it is a cracking good read, if I say so myself!
What is your vision for the future of patient and family-centred care in Canada?
Dr. McGee: I hope to see patient involvement in every level of decision making – on all health boards and quality councils, in protocol development, and in research projects. Here the motto "nothing about me, without me" applies.
Medicine has to get into 2015! Let's create more patient portals, let's make email communication available between patients and providers, and we need increased transparency in conduct among providers and patients, even at office visits. I'm a big fan of a doctor from Montana, he uses his laptop to project a patient's health records on his office walls - he actually co-creates the medical record with his patients. He’s respectful in his interactions and is totally open about inviting his patients to correct mistakes in their records and about letting them see referral letters.
We need to abandon the fax machine! We know that as many as 30% of referrals from family doctors to specialists go missing. It's time to move forward with electronic information and referral sharing.
How do you think organizations like Patients Canada help to bring the patient voice forward?
Dr. McGee: One of the things l like about Patients Canada is that they model what they talk about. I attended Patients Canada's 2013 annual conference on "Bringing the Patient Perspective to Healthcare", and worked alongside 200 people just like me! It was a room full of vocal activists who are bringing the patient experience forward from their own stories.
I had never ever met a Patient Advocate before this conference. When you're doing it all alone, you think you’re the only one. Then you go to Patients Canada, and you realize that this is inclusive. It empowered me for years! One dose of Patients Canada has a long half-life. Before the conference, I felt like a voice crying in the wilderness.After the conference, I thought “It is not a wilderness – it is a garden.”
Patients Canada was a total eye opener, so I’m a great enthusiast about the organization, and it makes me realize how my views and ideas can make a difference. Of course there are other organizations doing similar work, like the Canadian Patient Safety Institute (CPSI), but Patients Canada approaches healthcare from stem to stem. I believe that networking is foundational for patient engagement, which is why the notion of "patients included" at relevant healthcare conferences and events is so important.
My mission in life is patient advocacy. For me, it’s a new reason for living. I’m five years past diagnosis, and this is how I earn my remission.
Learn more about Dr. Robin McGee's work and new book on her website, www.thecancerolypmics.com.