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
Motivations
So my interest in patient engagement research comes from my own story.
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.
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.
Motivations
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.
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.
Motivations
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 as possible for her.
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.
Motivations
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, I noticed such and such”.
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.
Motivations
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 the reasons is personal, the other one is more constructive.
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.
Motivations
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 involved?
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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.
Motivations
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 and other caregivers and doing developmental assessments.
Motivations
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 across the country.
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.
Motivations
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 traditional ways.
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.
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.
Motivations
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 with HIV. We had a woman.