Canadian Institutes of Health Research. Discoveries for life. For several years Colleen McGavin has been giving voice to the unique needs and perspectives of patients and families. Sharing her story and real life experience has brought her many opportunities to participate in building a better health system. Her involvement as a partner in health research has shown her that people with personal experience of a health issue have an important role to play in finding solutions to improve Canada’s healthcare system. Ms. Colleen McGavin, Patient Partner.
Personally, I have a long history as a cancer patient myself. My medical history goes back more than 10 years from the first diagnosis until I was finally what I would call cured. During that same period of time I was doing a lot of caregiving for my parents as they were aging. So we sort of joke that over that period of time we got to experience just about everything that the health care system has to offer. I even got to participate in a cancer trial, so I had that perspective on health research at that point. About halfway through that time period, I heard about an organization in British Colombia called Patient Voices Network and that’s an organization that is sponsored by the Provincial Government and it brings together people with personal experience with the health care system, so people like myself, who have either been patients or caregivers, brings those individuals together with health care partners so that we can work on various quality improvement measures, or programs, or initiatives, for programs and services. One day I was asked to give a talk at an event in Vancouver, this is called the Digital Health Innovations Forum. And I was just asked to come and speak about the challenges that we had faced as a family in dealing with my – particularly my father who had a number of chronic health conditions and so what were the challenges that we had faced as a family. What I didn’t know or didn’t really realize that – was that in the audience there were a number of health researchers and that the whole event had been designed to bring health researchers together with what they call “knowledge users” or people who need the end – you know, the end knowledges produced by research, as well as the technologies’ sector or industry, in an attempt to design research projects that again were designed to help improve health outcomes for patients and so on, so I was asked to speak at that event. So the first thing I did was I introduced my dad. I had a lovely picture of my father there and described him as a man who really loved life, which is very true. He was a hard driving entrepreneur who was under a lot of stress in his life, because he was – there were seven children in our family so he had a large family to support. He smoked for many years. He loved to drink. He loved to eat, so he carried, you know, extra poundage. High stress life led to a lot of illness including pre-diabetes, gout, eventually chronic heart failure and prostate cancer, so these were the conditions he was dealing with later in life. So I talked about what I felt was the greatest challenge for our family in dealing with my dad’s care in his final years and that was around communication and coordination of care. Having information so that we didn’t do what I describe as catastrophizing about his condition. This is particularly a problem for my mother who every time something happened with my dad she was convinced that this was the end and it was very, very serious, but lacking the information, what would often happen, is that they would default to go to the emergency department. So I described increasingly frequent visits to the emergency department in the latter years of dad’s life and this was just the problem that we had, we didn’t feel that we were part of the care team, that our – the health care providers were necessarily communicating all of the information, the relevant information about dad’s health and so this was the pattern that emerged in the final year or two of his life. I went – I finished up my talk by comparing my dad, her – to my grand-daughter Franny who was only 18 months old at the time and I talked about how even at 18 months she was comfortable with technology. She could take her parents’ cellphone and she could flip through it and she knew that if she tapped and, you know, would drag her finger across the phone she could make really exciting things happen. We regularly Skype with her to visit and so the future that I imagined was a future in which people would be incredibly comfortable with technology. And I finished up the talk by saying that I really felt that technology did hold a lot of the answers to improving the delivery of health care, because if my parents had had more access and if we as a family had had more access to accurate information about my dad’s health condition we would have been able to plan better, have better – more timely interventions and all of those kinds of things. So in the audience there was a researcher named Kendall Ho. Dr. Ho was also an emergency room physician at Vancouver General Hospital and is the head of digital health Innovations at UBC. The things I said about my family’s experience, I didn’t know that day, but really, really resonated with Dr. Ho. I think he sees that a lot in the emergency department and I think it also validated an idea that he already had for a research project around something called home health monitoring. Ultimately he reached out to me. He contacted me, invited me to lunch, told me about his idea for an eHIPP proposal. Dr. Kendall Ho, UBC eHealth Strategy Office.
Tec4Home is a four year research program funded by Canadians to help research and Michael Smith Foundation Health Research to support our patients with heart failure at home, using technologies like heart sensors, blood pressure monitoring, so that how we can learn as health professionals to support our patients at home better. I remember when I was eight years old I almost drowned. Swallowing that water into my lungs was very scary. So in the same way heart failure patients have exactly the same feeling and so it’s not surprising that literature suggests that many patients with heart problems, heart failure, not only come to emergency department or hospital, but come very frequently. And so this project is to understand how technology can support our patients so that they can recover better and how as health professionals we can actually support them so that they don’t need to come to the hospital frequently. The results we’re expecting from this project are based on a hypothesis that home health monitoring is going to help to prevent as many emergency room visits or as many re-admissions to hospital and so ultimately better patient experience, better health outcome and better in terms of cost to the system. When I gave my talk I really didn’t even have a full appreciation of who was in the audience, but as I’ve become involved in the Tec4Home Program and met the people who are involved in this project and there are many people involved, maybe 30 or 40 individuals from government, the private sector, health authorities, researchers and patient partners like myself, I’ve come to appreciate what a multi-disciplinary team looks like, which has been really, really wonderful. Everybody brings their own special expertise and their own skills to this project. There’s no way that a project like this could be done in a, you know, just by a few people or by one or two people. It really requires the expertise and skills that we all bring. And that’s true for the Patient Partners as well, because we can do things like, as I mentioned before, validate that the idea is a good idea, that it is relevant to the needs of patients. Going forward into the future I am really hopeful that I’ll actually be able to be involved in the analysis of the data itself. I think that will be really exciting to be – to participate in that. And also then finally – well maybe not finally, but I also imagine being able to help to spread the knowledge that’s gained through this project. Maybe be given opportunities to speak about what we learned as we did this project. I think the most important requirement for a patient who wants to engage in research or any form of health care quality improvement initiative or whatever, is first and foremost that they be credible, that they have relevant personal, lived experience of the situation at hand, whatever is being looked at. Being involved in the Tec4Home Program has been really exciting. It’s been very, very rewarding. It’s brought a dimension back into my life that was missing for me for a while, because due to my own health history, I had had to step back from work and so volunteering like this has helped to bring the aspect of meaningful work back into my life, which has been really, really, really important. I’ve enjoyed all of the people that I’ve met. It’s been a huge boost to my self-esteem to know that I actually have something to contribute in a situation like this. It can be very intimidating for a layperson when you’re sitting around a table where everyone has the title doctor and you don’t have that title. So it’s been a real eye opener for me to realize that I do have something to contribute. That patients and families and caregivers do have something to contribute and we have this special skillset that we can bring to these projects. And so I value in having patients in our study in Tec4Home is to be able to freshen my view of what patients need to see and what their experiences are. So it freshens my view of how to support the patients. It softens my heart and helped me understand the patient’s journey through these heart failure illnesses. “When patients and families are included on research teams and truly have a voice in what matters, it increases the likelihood that health research will actually have an impact on health care.”
Colleen McGavin. Thanks to the Michael Smith Foundation. Canadian Institutes of Health Research. www.cihr-irsc.gc.ca