Diversity of inclusion often came up as an important topic by both researchers and patient partners when discussing patient-researcher partnerships. In this topic page, we describe the varying perspectives and considerations from participants when reflecting on this topic.
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Without more diversity, Amy feels we can’t challenge the status quo
We haven’t figured that one out. I think this is a topic that is on everyone’s radar as far as patient engagement is concerned, how to make it equitable, you know, because if we only ever hear from people of a certain demographic, of a certain social class, you’re not […]
The term diversity was spoken about in different contexts, and across varying dimensions such as demographics, culture, prior knowledge or experience with research, and levels of care. For example, some people feel that a wide range of patients should be included because everyone has a lived experience and point of view to contribute, while others wanted patients who had varying experiences with care related to a specific disease or illness to capture all stages of the lived experiences.
On his research advisory committee, David aimed to include varying experiences of HIV as well as experiences with research involvement
I had never been involved in patient engagement before, so none of us; my supervisor, the other researchers, nobody had ever done… I had done some participatory work before with communities on different topics, but not patient engagement as such, so we really considered the website, read a little bit […]
Engaging with a broad range of people as partners, advises Linda, should be the goal
Patients get involved in different committees, because they’re all – there are many subcommittees, and I’m involved in the educational materials when that really interests me, and I know that I’ll have more to contribute there. But – and I don’t – again, as I said, I don’t know if […]
Challenges and barriers
When considering the types of people who get involved in research partnerships, the lack of diversity in was noted and commonly mentioned as a challenge in efforts to engage people from various groups or places. Barriers to diversity were discussed from both researcher and patient perspectives.
In Nicolas’s experience, only a small number of patients are truly interested and able to engage in research as a partner
So the same thing I always say is the same thing with doctors. Not all doctors want to do research. A few. Not all nurses want to do research. A lot of nurses just happy doing their job. So patients are just happy doing their job and just taking care […]
Partnerships in research, according to Katie, need to be more accessible to diverse populations
I think sometimes it’s going to have to be a combination of researchers appreciating the importance of diversity, but also a little bit of a cultural shift. I really don’t like that word, but it does require some education about research and that it’s okay or important for patients and […]
There was general agreement among patients and researchers that it is often the same type of person who tends to get called on to participate or who seeks out opportunities for partnership, and there is a need for greater effort and ingenuity regarding how to ensure a diverse range of patient partners in research. Researchers and patients had many suggestions based on their partnership experiences.
Some mentioned that it’s important for researchers to promote partnership opportunities at hospitals, health organizations, and within the community to increase patient engagement and diversity, but researchers need to consider meeting (and engaging) with potential partners in their own communities. To read more about how researchers engaged patients in research, you can visit Developing Partnerships.
If researchers came out to the community, Karen suggests, patients might feel more comfortable about getting involved
I think you’re going to have some difficulty because, not everybody is going to want to come to a table, right. They’re not going to feel comfortable. Obviously, if you don’t see them out and about, chances are they’re not also going to come into a strange situation. But, I […]
Others also mentioned that making connections with health organizations or community partners can help researchers find potential patient partners.
Community agencies and members can help with recruitment suggests Emma
So, I think again I kind of mentioned this but thinking about partnering or just connecting with different – like putting the time upfront to connect with community agencies I found is really, really important. Because like I had an experience where I when I did that and I was […]
In addition, more patients may be interested in becoming a patient partner if researchers are open to having patient be involved at any point throughout the research life cycle.
Misconceptions about patient partnership, Maureen feels, might limit the types of patients who get involved
So you have to be really careful about what you’re – you know the options that you make available and maybe that person wouldn’t jump into that project just because of that one sentence – that could have turned them off. And so we adjusted it to make sure that […]
Increasing diversity in patient engagement was mentioned by some to be a creative process in which researchers may need to rethink their strategy for engaging patients.
Ian suggests that researchers rethink communication with potential patient partners
I think we have to change the way we write, the way we communicate, the way we speak. We have to really – I mean everything that we do needs to be – we need to take literacy … and health literacy is something totally separate from actual literacy, so […]
While there are a wider range of patients getting involved in research partnerships, there was general agreement across participants that there is still much room for improvement and diversity will be a common theme going forward for years to come. Some people felt that that researchers should start thinking about how they can be more inclusive in the initial stages of project planning.
Claire feels that researchers should reflect on how they can be more inclusive
Yeah, well, I would have to say that it requires more effort. So, I think often when patients are engaged in research, it’s that convenience factor “Oh, I have a patient who’s articulate,” but, they may not be representative of the broader society. And it is my concern that we […]
When designing clinical trials, Louise feels that researchers should engage more patient groups
So there’s all kinds of complexity to trials. And I think it’s unfortunate that researchers don’t engage more patient groups and patients to look at their trial design. In fact, of course, to develop the trials. But even to look at the trial design they’re proposing, to ensure that they […]
With the increase in diversity of patient partners, many are excited to see how partnerships will evolve and believe that this will add to the richness of the data collected within projects, as well as enhance the relevance of the application of results.
Engagement is here to stay, but Maureen acknowledges some growing pains to work through as yet.
I think that’s where we’re going. My hope – I don’t think it’s going to go backwards, like I think it’s here to stay. I guess my hope is that I really would like to see more diversity. I’d like to see more myths dispelled about what it takes to […]
Review date: 2022-03