Background/Purpose:

The movement for patient engagement in research aspires to greater inclusion of and collaboration with patients at virtually every point in the research cycle. Currently there is little empirical evidence concerning how patient engagement in research affects the lives of the patients involved. Our objective was to examine the experience of what it takes to be involved in research as a patient partner, focusing on occupational (relating to activities of daily life) aspects of their involvement, and how the conditions of involvement shape the nature of their participation and who can participate.

Methods:

This project was designed in a collaboration with patients with arthritis who had experience as research partners. Eligible participants were current or past members of a patient advisory board in an arthritis research centre. Participants were invited to take part in an hour-long interview. A semi-structured topic guide with prompts and probes was used to elicit detail about the benefits and challenges of being a patient engaged in research. An iterative thematic analysis of the interviews was conducted using constant comparison method. Discussions with patient partners informed the development of themes.

Results:

In 2015-2016, 22 participants were recruited, 21 (95%) were female, ages ranged from 26 to 68 years, and time spent as a patient engaged in research ranged from 1 month to 10 years. Twelve (55%) had inflammatory arthritis, 5 (23%) had OA, 4 (18%) had both, and one (4%) did not report. Fourteen (64%) had at least one university degree. 12 participants (55%) were employed fulltime, 9 (41%) were retired, 2 (9%) were students and 2 (9%) were on disability benefits. Two themes emerged from the findings, the first concerned maintaining occupational balance as a patient partner, in which many participants described their experience as volunteers in a patient advisory board as being rewarding and purposeful, though sometimes difficult to balance with priorities such as family, work, and health. Some described their volunteer work as akin to a full-time job, drawing on professional skill sets developed in the past. Many emphasized the time and effort it took to develop the knowledge-base to participate. The second theme was drawn from the participants’ concern at the difficulty of making patient engagement more diverse and reaching under-represented populations, specifically noting issues such as gender imbalance, and poorer representation from marginalized communities, lower socio-economic classes and people with limited educational opportunities.

Conclusion:

Our findings show that for patients who have had the opportunity to be partners in research, it can be both rewarding and burdensome. Our participants also identified, with concern for the democratic ideal of inclusivity, that there are populations lacking the opportunity to be engaged in research and are not being reached or represented. This is of concern due to the important role that the social determinants of health play in determining quality of life for people affected by arthritis. Our findings suggest that increased efforts and resources as well as new strategies are needed to bring increased diversity to patient engagement in arthritis research.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/achieving-balance-and-diversity-in-patient-engagement-in-research-perspectives-from-patients/