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