KT Encounters: Supporting patients as partners in health research
As part of the KT Encounters blog series we’ve heard a lot about the importance of incorporating patients and patient representatives as partners in research projects.
Here, patient partner and research collaborator Colleen McGavin shares her perspectives on how researchers can support patient partners and enable them to share their expertise in a way that adds most value.
Supporting patients as partners in health research
In the latter years of his life, I became a caregiver for my father who was living with congestive heart failure and a variety of other health issues. Coming from career as a college business instructor, this was a steep learning curve. One that many of us will face at some point in our lives, but few of us are prepared for.
Some years after he passed away, MSFHR invited me to share my experience as a caregiver and my perspectives on the challenges faced by seniors with chronic conditions. Presenting to a group of clinical researchers and people from the tech sector, I talked about the challenges we faced as a family, and how (in my opinion) innovations in the use of digital technologies are the key to improving the lives of patients and families like mine.
I had no idea that this would propel me into the world of health research as a ‘patient partner’ and lead to a satisfying and rewarding relationship that is still continuing.
Experiencing the health care system as a caregiver
Whilst caring for my father it soon became apparent to me that our health care system was originally designed to deal with episodes of acute illness and disease, often within four walls, rather like a conveyor belt where the assumption is that you come in sick at one end, get diagnosed and treated, and then emerge at the other end, hopefully well again. In this environment, care decisions are often made without patient and family involvement which proved to be problematic for us.
I understand that, historically, it wasn’t practical to include patients and their families in medical decisions because care providers made decisions quickly, acting on specialized knowledge that wasn’t available to the public. But today, when dealing with chronic illness like heart failure, the patient journey simply isn’t that linear - much more of it takes place in the community, at a variety of offices and clinics. In his final years, my dad was dealing with multiple doctors in many different care settings - including his GP, a cardiologist for his heart condition, a urologist for prostate cancer, a neurologist because of a blood clot that formed in his brain after a fall, a dermatologist for skin cancer, and an ophthalmologist for cataracts. Each one focused on their particular body part or system, often without full knowledge of his other medical conditions, meaning we received varied and sometimes conflicting advice, even about what medications to take.
For my mother and I, looking after my father’s health became the focus of our lives, working around frequent trips to the doctor’s, the lab, the pacemaker clinic, the pharmacy and, near the end, the emergency department. My mother especially lived in a constant state of anxiety because she often had incomplete, misconstrued or misinformation about his condition. Or even no information at all.
For her, and many seniors, being left out of care decisions, and feeling that they can’t get rapid enough attention for their concerns, means they become anxious and they go to emergency… again and again and again. Often ending up admitted as sub-acute patients, occupying hospital beds meant for the acutely ill.
I believe this can be avoided, or at least mediated, using digital technologies. It might seem counterintuitive when talking about seniors, but in a world where my four year old granddaughter can already make exciting things happen on her parents’ cell phones, I’m confident that innovations in the use of digital technologies are the key to improving the lives of patients and families like ours.
Becoming a patient partner and research collaborator
As I presented my experience as a caregiver at the MSFHR event, the things I said resonated with one of the workshop attendees, Dr. Kendall Ho, an emergency room physician and the head of digital emergency medicine at Vancouver General Hospital. Dr. Ho was in the process of conceptualizing a CIHR grant proposal called TEC4Home: Telehealth for Emergency-Community Continuity of Care Connectivity via Home Telemonitoring. This is a research project to examine the use of portable monitoring technologies to support patients with heart failure transition from the hospital back into the community. Patients collect their own biometric measurements at home (i.e., weight, blood pressure, pulse, oxygen saturation) and have ready access to a monitoring nurse with whom they can consult if they have any concerns. Patients have the reassurance that their measurements are being monitored daily by health professionals to detect deterioration and intervene early, helping avoid unnecessary emergency department visits and hospitalizations. This has the potential to not only improve the patient experience and health outcomes, but also reduce healthcare utilization costs.
After my presentation Dr. Ho reached out to me to explore the possibility of becoming a collaborator on the TEC4Home research team, to draw on my experience as a caregiver to help them focus on patient-identified priorities. It was a proposition I eagerly accepted, for several reasons. Firstly, the idea that I could turn the experiences related to my father’s illness and death into something positive was appealing. Secondly, the opportunity to learn more about health research on the ground was welcome. And finally, because I had left my position as a college business instructor in 2008, forced to retire early because of my own prolonged journey with cancer, I was always looking for ways to inject meaningful work into my life. I’m pleased to report that my involvement with TEC4Home has fulfilled my hopes in all these ways.
"Having a patient at meetings can help to keep the conversation patient- rather than system-centered. And of course, patient partners offer insights that one can only develop by having personal experience."
My first task was to write a testimonial to support the project’s funding proposal – something I wholeheartedly did. In it I shared my perspectives on how the research could address the challenges faced by patients like my father and I like to think that it contributed to the project getting funded because it helped to meet the definition of patient-oriented research. I was also given the opportunity to review the proposal itself and apply the skills I honed when teaching business communications to make the document more easy-to-understand. Something I’ve since learned can increase the chance of funding success.
I’m pleased to say that this relationship didn’t end once the TEC4Home project received funding. Since then I have continued to contribute to Dr. Ho’s research as a committee member, firstly on the evaluation sub-committee where we developed the promotional materials used to recruit study participants and the survey instruments that were used to capture their information, and later on the project steering committee.
Being a lay person on these committees where nearly everyone has the title ‘Doctor’ can be very intimidating. One is inclined to ask, what can someone who is not trained in research or medicine possibly contribute to the discussion? But I’ve found that lay people in these kinds of governance positions have a lot to offer. As a volunteer and an outsider, a patient partner is not encumbered by institutional views and cultural norms. One is freer to speak one’s mind (respectfully, of course) and raise issues that others who are more conscious of their position and relationships may not feel comfortable raising. Having a patient at meetings can help to keep the conversation patient- rather than system-centered and I’ve been told by doctors that having a patient at the table changes the conversation. And of course, patient partners offer insights that one can only develop by having personal experience.
Supporting patient partners
For a patient partner having the right supports in place can be the difference between having a token representative on the team and enabling them to share their expertise in a way that adds value to the project.
Support is a broad term and can include assistance with administrative, logistical, financial and psycho-social issues. Common examples of support are travel arrangements and reimbursement for out-of-pocket expenses. Through support, ideally barriers to engagement are removed and patient partners feel valued members of the research team.
One support challenge we experienced in TEC4Home is that the team is large and spread out. The team knew each other well and in the beginning I was an outsider, and to top it off I live in Victoria away from the research hub. Most of our meetings are held by teleconference which is challenging for me because you can’t see who’s talking and sometimes the audio quality is poor. The acronyms and technical terms complicate this further and cause someone like me to lose the thread of the conversation and feel like even more like an outsider.
"For a patient partner having the right supports in place can be the difference between having a token representative on the team and enabling them to share their expertise in a way that adds value to the project."
Through open communication with Dr. Ho, and with the support of his staff, we have been able to improve things immensely: I was given a document outlining everyone’s name and their role within the project, and everyone was asked to speak clearly, face the microphone and state their name before speaking. Dr. Ho is conscious of asking for input from people on the phone so we don’t feel overlooked, and over time I’m feeling more empowered to ask people to explain acronyms, which reinforces the need to avoid them!
Although being on the research team has been hugely valuable for me I do have one caution about designating one or two patients as ‘representatives’ on a committee, because, of course, one or two patients cannot represent the experiences of all patients with the same condition. For this reason, it’s important to consult with a broader range of people, by, for example, administering surveys or conducting focus groups or by forming a separate patient advisory group with diverse representation. Of course the more patient partners you have in a project, the more resources it takes in terms of time and money to support them. This needs to have a budget set aside and should not be overlooked.
TEC4Home has just completed the pilot stage and is ready to begin the randomized controlled trial phase. I continue to be an active member of the steering committee and the evaluation sub-committee and I look forward to having input on the data analysis and knowledge dissemination components of the research. The experience has been stimulating and rewarding and I’m grateful that I was asked to be part of something that I think will make a real difference in the lives of people dealing with chronic conditions like heart failure. Who knew what a 15-minute speech could lead to!
Patient Engagement Lead for the BC SUPPORT Unit
Colleen is the Patient Engagement Lead for the BC SUPPORT Unit and an active patient partner with TEC4Home. She has been a volunteer patient partner with Patient Voices Network (PVN) since 2010, mid-way through her own 10-year cancer journey. Her association with the BC SUPPORT Unit started in 2013 as a volunteer and she was subsequently hired to develop and implement the Unit’s patient engagement strategy.
The opinions expressed in this blog post are those of the author and do not necessarily reflect the views of the Michael Smith Foundation for Health Research.