Diversity

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.  

Feel free to jump to the following sections:
Challenges and barriers
Looking forward

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.

Diversity

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 of articles about patient engagement and we went for what was the kind of more, let’s say, obvi

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Diversity

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.

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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. 

Diversity

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 of themselves;. So it’s a small portion, I think, of patient population that will be involved in research. So the ripple effect, I don’t know.

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Diversity

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 families to get involved in research.

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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

Diversity

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 think you could include them if you did a little bit more in the way of survey, you know.

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Others also mentioned that making connections with health organizations or community partners can help researchers find potential patient partners.  

Diversity

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.

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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. 

Diversity

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.

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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.

Diversity

I think we have to change the way we write, the way we communicate, the way we speak.

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Looking forward

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. 

Diversity

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 don’t have representation – full representation – as patient-partners.

Diversity

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.

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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. 

Diversity

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 get involved so that people who we really need to hear from are really heard - I think that's really important.

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Last updated
2020-03
Review date
2022-03

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