Developing Partnerships

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. 


Feel free to jump to the following sections:
Advertising partnership opportunities
Word of mouth and networking
Building connections 

 

Advertising partnership opportunities

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.

Developing partnerships

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 Centre, so she helped sort of put the word out for any patients that were looking to partner with researchers.

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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. 

Developing partnerships

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?

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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.

Developing partnerships

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

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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. 

Developing partnerships

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?

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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.

Regardless of how researchers reached out to patients, one couple mentioned that researchers should not forget caregivers and family members as possible patient partners. 

Developing 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 very fond of, I said “Why was I picked?” She said because frankly, I was the only one standing.

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Word of mouth and networking

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.

Developing Partnerships

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.

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Developing partnerships

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 the clinicians that have a better sense of who could be brought onto the team.

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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.”

Building connections

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. 

Developing partnerships

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; but to get started initially it’s about presence.

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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.

Developing partnerships

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 don't want other people to know they have cancer.

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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.

Developing partnerships

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 those that have had a poor experience with care.

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Last updated
2020-03
Review date
2022-03

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