For Sandra Kidston, keeping busy helps her stay healthy. For more than a decade, she has put her considerable energy and experience towards improving the care provided to patients with kidney disease. We sat down with Sandra to learn more about what motivates her involvement in research and what being a patient advisor* means to her.
How would you describe patient-oriented research?
Patient-oriented research allows patients to share their insights and perspectives with researchers. Patients discuss relevance, urgency, empathy, continuity of service and much more with researchers and others, often in well-formed roundtable discussions. We learn from each other. It’s a two-way street.
Why did you get involved with patient-oriented research?
I became intrigued with how much we could accomplish when working together towards similar goals. I have lived-experience of the healthcare system. Like many patients, I had good and bad experiences along the way. I wanted patients with kidney disease – those on dialysis and those waiting for transplants – to have better experiences. I needed to be involved especially for my son's sake, and in memory of my father and brother both of whom I lost to kidney disease. If my efforts move the needle towards better care then I feel I’m moving ahead and not wasting my time looking back.
Does that desire for positive change create common ground with researchers and healthcare practitioners?
I think it does. At heart, I believe that researchers are professionals who really want to improve the quality of life for patients. They want that as much as we do. Researchers and patients alike want to make that difference. I think that change is a motivation for all of us and over the past 12 years I can see that change occurring. It is a pleasure to see the dedication of researchers, patients, and staff within MSSU result in the improvement of our care. I hope that the researchers feel supported by the patients—even when patients keep it real.
Why is it so important for researchers to hear the patient perspective?
It’s about focusing on the needs of patients. Without that first-person perspective, it’s easy to make assumptions. As a kidney transplant recipient, some people expect that I would think ‘the more donated kidneys, the better.’ But that’s not always the case. I have to be up front about my philosophy about particular aspects of live organ donations. In my experience, decisions about live donation are complex and happen in the context of other family members’ needs. Donating may not be the right decision for some particular patients. Common sense says: let’s get lots of kidneys coming through, we’ll take the best that we have and give people the opportunity to live, without hurting families in the process.
We also need to make sure that the health care system is available to support live kidney donors, especially if their health changes with age. Generally speaking, recipients do better with live kidney donations. If a family member feels that a live kidney donation is a viable option, then the donor must have the best health care available if and when needed.
For some, my views are unexpected. There needs to be open dialogue—lots of listening and learning—to really incorporate the patient perspective in a meaningful way.
Do you have any advice for patients and researchers about how they can create spaces where those dialogues can happen?
In general terms, if I feel research is not patient-oriented, I bring the conversation around by asking the researchers direct questions. How will that personally help me? If I have diabetes, how would that help me? If I have heart disease, how would that help me?
When researchers explain how their research would help me, then they are expressing themselves in layman’s terms and I clearly understand where the research is going. The questions are not meant to be mischievous; they are designed to create a shared understanding. Sometimes, it’s best to have a patient colleague with a specific illness or condition to join our working group to bring a lot of knowledge to the table.
Most importantly, try not to feel guarded and stay open to others. Different perspectives can lead to misunderstandings and sometimes conflict. You can’t take it personally. Deal with people directly but in a kind, responsible, and respectful way. I try to look for strengths in individuals and draw them out.
Ultimately, researchers are doing research not for us but with us.
You’ve been a patient advisor, in one capacity or another, for more than a decade. Has the role of a patient advisor changed in that time?
Absolutely—and it has been an exciting change! Years ago, patients tended to work in isolation, often with people who talked above them. You could ask the teams to use plain language until the cows came home, but they were still going to go back to medical jargon. When I started volunteering with safety and quality teams, I was labelled as “strange.” Everyone around me felt I was reaching for the stars when I asked not to be treated as a token (and actually cried about it), when I asked to be part of my own health team, and when I wanted patients to come together to help researchers and healthcare practitioners make better decisions with patients.
Now, it feels that the stars have aligned and the healthcare system’s approach to patient engagement increasingly encourages and supports these measures. There is a much bigger emphasis on meaningful communication and plain language. Patient advisors are enrolled in training. I’ve taken the peer-support training with the Kidney Foundation, and the SPOR Foundations in Patient-Oriented Research training, and found them both very helpful. Patient advisors have the chance to work together and support each other. There are more established roles for patient advisors, something many long-time patient advisors have advocated for. It’s a big change. Now, I leave meetings very excited to see that we’ve come this far.
Perseverance is not a weakness or strange—it is simply a means to being able to reach your goal. In my case, this meant that better health care for all patients must include the patients themselves.
What advice would you give to someone thinking about becoming a patient advisor?
For those thinking of becoming a patient advisor, please apply soon. You will be joining a diverse and dedicated group! I have a lot of respect and admiration for our patient advisors. These patients have a lot on their plate, but they are supporting researchers, clinicians, physicians, staff and each other because they all care about present and future patients. Patient advisors have very different medical experiences: mine is kidney, others range from heart to mental health. You will definitely make a friend or two along the way. My experience as a patient advisor lead me to a life of learning, and helped me keep a positive outlook even though the wait for a transplant can be very long and arduous.
Sandra Kidston is new to the MSSU, but has been sharing her experiences and expertise as a patient partner with Can-SOLVE CKD, a member of QEII quality teams for more than a decade, and for four years on the Board of the Kidney Foundation. Sandra has worked with Trizec Equities Ltd, and the Society of Deaf and Hard of Hearing. Sandra is a past Executive Director for the Coordinating Council on Deafness and Hard of Hearing, and has worked as an Educational Interpreter Consultant for the Atlantic Provinces Special Education Authority. Sandra volunteers with Halifax Public Libraries teaching English as a Second Language to newcomers to Canada.
*This interview was conducted before the new MSSU policy adopting “Patient Partner” as the preferred term for describing engagement with patients and caregivers.