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.
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.
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.
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.
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.
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.
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.
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.
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.