In this topic page, we present a summary and some examples of how researchers went about finding and engaging patients and caregivers to become partners in research. You will also find suggestions from researchers and patients/caregivers about how to develop partnerships based on their experiences. Some of the people we spoke to mentioned that their positive partnership experience was in part because of the meaningful relationships they developed through working together in research.
Researchers told us about different strategies they had used to advertise opportunities for patient partners to join their research team, such as posting advertisements in hospitals and community locations, online, or sending notices through their networks.
Posting an ad on a hospital website was one way that Nicole’s team searched for patient partners
The hospital has this group called PFAC — Patient Family Advisory Committee maybe it stands for — and so we went through them. We advertised on the website and then we have someone here who is part of the Strategy for Patient-Oriented Research (SPOR) Support Unit, part of our Methods […]
However, some people said that strategies for engagement may depend on the type of research being planned or in progress. For example, strategies may differ if researchers are hoping to partner with members of the community versus a specific patient group.
Researchers should take time to ensure the best fit for the team and project, suggests Cathy
Interviewer: For sure and thinking about the diversity of it, how do you think researchers could get out to more diverse population to make sure that they are actually having diversity in their research projects? Difficult and I guess it depends on the research too, whether you go to community centres […]
Patients had many suggestions as to how researchers could use different types of outlets to reach out to patients. Some patients mentioned that posting opportunities online is a great way to leverage the use of technology. Examples included online forums, hospital and organization websites and social media.
Maxime suggests using a variety of strategies to find patient partners
Yeah, but I don’t know what the mechanisms that would be in place specifically at the [name] for the sort of recruitment, but obviously a good path for that would be to consult with the Patient Family Engagement lead at these clinics or these hospitals. But of course just doing just regular […]
Take advantage of social media to find patients partners, suggests Amy
Maybe the researchers have to hold some kind of community event, where you’re going to explain in plain language what’s in it for us. Because I have heard, you know, at these National Paediatric Conferences, the researchers are somehow relieved or happy that, once you get the families involved in […]
Furthermore, patients suggested that it would be helpful if there was a common online portal for researchers to post opportunities that could be shared widely. Some people mentioned that a matching tool would also be helpful to link together patients and researchers who have a common interest. We also spoke with some individuals who have been involved in the development of similar tools.
Cathy was involved in creating a tool that would help connect researchers and patients
Sometimes even you see it in the newspaper where researchers are looking for patients to be part of their project. I would think the network also that’s there because different universities, different research centres have that network. I don’t know whether there’s a public forum that you could use? I […]
Annette’s team developed a tool to match researchers with families and children
But there are other parents that contact us and they say they want to be involved. So what we’ve developed is a matching tool, so they fill out the tool basically telling us a little bit about themselves, the type of – their child’s age and type of disability, so […]
As well, some patients mentioned that they searched for opportunities themselves; however, knowing where to find those opportunities was not always clear to some people. For others, they came across a posting by chance, such as a posting on a hospital website or out in the community, and made contact with the researcher.
Manda feels that it’s not always clear to families about how they can get involved in research
Interviewer: Yeah, no that’s fine. What do you think might make it challenging for families or parents to get involved in research partnerships? Not knowing where to go because there are so many organizations out there, everyone has a mission. You know, there’s a different coalition association, the hospital organization, […]
Regardless of how researchers reached out to patients, one couple mentioned that researchers should not forget caregivers and family members as possible patient partners.
Frank and Rhene feel that caregivers should be considered more often for partnerships
Frank: Yeah, both the patient and the caregiver. And the heck of it is, you need somebody that has all the problems I do and have experienced the healthcare system and also is articulate enough to talk about it. I was asking one of my doctors, the one that I’m so […]
Participants also talked about leveraging networks and using word of mouth to find patient partners. For example, some researchers looked to colleagues to connect them with patient partners that their colleague has worked with in the past.
Manda suggests that families share known opportunities for others get involved as a patient partner
So it’s all about you just have to have inquisitive nature and what I’ve come to learn is families will help families. If you don’t talk to other parents or other caregivers you won’t know. So in essence it’s just always ask questions. Social media has been very helpful in […]
Dawn’s research team finds patient partners by reaching out to colleagues or support groups
So we recruit patients and caregivers by word of mouth, among the current team members. So depending on which team I’m working on, we talk about is anyone aware of a patient or caregiver that would be good to bring onto our team? And usually it tends to be more […]
One caregiver mentioned that families can share opportunities that they know of with each other as well, or help connect each other with researchers that they have been involved with. For example, Manda says “So it’s all about you just have to have inquisitive nature and what I’ve come to learn is families will help families. If you don’t talk to other parents or other caregivers you won’t know. So in essence it’s just always ask questions. Social media has been very helpful in terms of Facebook trying to get out there, but there’s families 1, who don’t know English, 2, who don’t have social media, 3, they don’t have time for it. So there is no one centralized let’s just say portal where families can go to find information.”
Researchers said that it was important to go to where the relevant groups or people are to present your project and share what opportunities there are for patients to get involved as partners. For example, some researchers shared that they first engaged with patients within the community, which further snowballed into a research partnership. Their experience suggests that it is helpful to look for local groups, organizations or events as possible starting places for exploring engagement.
Once you start building relationships, more opportunities present themselves, says Wendy
I’ve been working with Indigenous communities for about 10 years now and it was hard getting started, but things sort of snowball once you get in. I mean once you get in, you’re not ever in, but when you start building relationships then other opportunities and doors seem to open; […]
Both patients and researchers discussed that it can be helpful, depending on the circumstances, to connect with a community member who can help with finding patient partners; however, this may not always be the most appropriate strategy.
Louise flagged that some people might not want others to know about their involvement in research
Another thing I learned about research was fascinating was certain racial groups – and this is probably because – maybe because, for sure that we were dealing with a stigmatized disease, but there are a lot of stigmatized diseases now. All mental health is still very stigmatized. Even some people […]
Patients also mentioned that it’s also important for researchers to ensure that they engage with patients in an environment that makes patients feel comfortable.
Academic and hospital environments can be intimidating. Claire advises researchers to engage with patients in places where they feel comfortable
I think, you know, sometimes meeting people on their own turf, you know, if you’re trying to engage members, say, of the homeless community, then it’s about, you know, meeting people where they are. As well, because, you know, hospital or university environments can be incredibly intimidating for people, particularly […]
Review date: 2022-03