In this topic page, we discuss why researchers and patients wanted to get involved in patient-researcher partnerships. People told us about their personal motivations and often about wanting to address a particular gap in care that they had experienced – these were the two most common reasons people wanted to become involved with research partnerships.
Many participants told us they wanted to give back to help improve care and contribute to research based on their own experiences either as a patient or caregiver. The lived experience that the patient partners brought to the projects included a wide range of conditions, illnesses and care journeys, such as addiction, rare genetic diseases, Human Immunodeficiency Virus (HIV), heart disease and general surgery). Likewise, the types of research they engaged in was widely variable.
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Researcher motivations to involve patient partners
Medical research on a rare disease that Maureen was diagnosed with as a child, was sorely lacking
So my interest in patient engagement research comes from my own story. I was diagnosed with a rare disease when I was eight years old after four years of searching for answers, and I became involved with the first longitudinal study in my disease, so I was at the [name] for […]
For the most part, people wanted to get involved in research partnerships to help move research forward, and improve the healthcare experience for themselves and others.
Marc feels that his involvement in research has both personal and universal benefits for caregivers
Interviewer: What makes you want to stay involved? It’s the same thing for me, it’s an enrichment for me, so for sure… And I find that, for me, it reflects important things that we must really consider. It’s crucial! To give the opportunity to the people who are living it on […]
In some cases, getting involved in research was a necessity for patients to improve their current situation. For example, one patient became involved in research because there were no treatments for HIV at the time of her diagnosis, and in particular, there was no research focusing on women and HIV.
As an advocate for quicker access to HIV treatments by shortening research trials, Louise became involved in research as a patient partner
I guess I got involved in healthcare issues, policy issues 25 years ago. And I was diagnosed with HIV, and this was in 1994. And we had no treatments for HIV at that time, so I was told I had about two years to live, and that was it. So […]
Others observed that in certain research areas, patient partners were lacking. For example, one caregiver felt that researchers were coming up with their own ideas about how to research children and disability, without actually including children and their families as part of the process to identify relevant research priorities.
Manda feels that patient representation is lacking in research related to children and disability
Unless you’re in that world yourself –sorry. It’s a very difficult world to be in and you really do have to fight for your rights for your child, and being that she’s so young I want her to have a successful life, and I want to make it as easy […]
Many people found their experience as a patient partner to be rewarding and interesting. People were excited to contribute to improving patient care outcomes, and expressed continued interest in being involved as a patient partner.
Learning new knowledge and helping others were motivating for Cathy
Certainly, as I said before, feeling that your opinion matters, that you are contributing to better health for your friends and neighbours and strangers. The facilitators make sure if you’re on a teleconference that everybody is heard. At first you’ll say “It’s Cathy, and I’m wondering about on page three, […]
However, patient motivations to stay involved as a partner in research sometimes changed over time. For example, one patient felt that they did not have much to contribute as a patient partner because they were no longer in active cancer treatment and unaware of current treatments and technologies. Although another patient no longer needed care, they felt that they still had much to offer as a patient partner. To read more about patient partner roles, you can visit Role Determination.
For personal and practical reasons, Linda has decided that she may not continue as a patient partner
I don’t know. I mean, I’ve pulled back from almost everything else now except for the last big project I’m on, and I have actually said to people, this is my swansong for patient engagement. And one of the reasons I feel that, is both – is – one of […]
Although people were often driven by personal reasons to be involved as a patient partner, they were still reflective about potential opportunities and if it was the right decision for them. For example, patients would consider “Is the timing right?” or “Do I want to partner with this specific research group?” Although patient partners felt that compensation was important to acknowledge their time and contributions, compensation was not mentioned as a reason why patients got involved as partners in research. To read more about how patients’ contributions to research are valued, you can visit Valuing Contributions.
Frank and Rhene would consider future patient partner opportunities if they feel worthwhile
Interviewer: So, I’m thinking about what made you want to stay and you had mentioned that you didn’t want to just – once you commit to something you want to stick with it. Was there anything that made it easier to stay or that could have made it easier to stay […]
Researcher motivations to involve patient partners
Researchers mentioned many reasons why they were interested in working with patient partners. For example, they sought input provided by patient partners to help researchers decide on appropriate research questions to address gaps they observed in their area of research and/or clinical practice.
Janet noticed that assessments for pediatric growth were not specific to the Inuit population
I’m here talking with you about how I got involved in doing collaborative research. And this actually started many, many years ago when I was working as an Occupational Therapist in the area of Developmental Paediatrics, and I was working with Inuit children and their family, caregivers – their parents […]
Gillian’s previous policy work influenced the development of her research program
Okay, so what motivated me to, I guess to, get involved in partnership research was my experience when I worked at the Mental Health Commission of Canada. So I was working on the mental health strategy and one of the tasks in developing a strategy for the country was to talk to people […]
Researchers were reflective about their own research and partnership experiences, and wondered if their work was in fact having an impact on the population of interest. Researchers were thus motivated to include patient partners on projects to focus on outcomes that would have more meaning to patients and their care.
Being involved in patient engagement helped Annette reflect on her work and its intended purpose
So I would say that you know I was doing traditional research like most, you know where you have your own idea, you have your question, your PI, you assemble a team with different experts that relate to the project and you do the project and you disseminate in your […]
Furthermore, for researchers engaging with patients as advocates, advisors, or participants, they had the opportunity for patient involvement in research to evolve into a partnership. For example, one researcher found the exchange of ideas between researchers and patients slowly evolved into a partnership, even though the project itself did not change.
On David's project, patients and researchers were motivated to know more and the partnership emerged
I think I was like, asking for change. At the same time, I think when opportunity showed… when there were opportunities, I made sure that these individual members, these individual patients, could meet some researchers, so they could talk for themselves, make a room for themselves, and I think slowly […]
As well, some researchers became interested in patient-researcher partnerships after observing fellow colleagues who have had patient partners on their research team or when exposed to the work of others through scientific publications.
Esther learned about how to partner with patients from a colleague with experience
And, that team already had integrated three community scholars. That’s how they called them. And, I think, that’s a fantastic term to refer to the peer researchers. They had made sure that they would find three people who had a bit of a different background in their experience with living […]
Review date: 2022-03