Background: In a previous rural project, we aimed to enrich objective data in a case series with patient voices. We would have ideally included patients as part of the research team. This involvement, however, would have identified the patients as having the rheumatological condition of interest. We therefore proceeded without patients as co-researchers due to confidentiality concerns. Reflecting on our discomfort from not involving patients as co-researchers, we identified a tension worthy of exploration. The tension was between (a) involving patients as co-researchers and (b) breaching patient confidentiality by disclosing their condition. Confidentiality may be further complicated in rural research due to community networks. In absence of available literature, we obtained a small grant and ethical approval to explore this tension.

Objectives: The objective of the research was to gain a deeper understanding of patients’ thoughts on being involved in research as co-researchers, particularly regarding the tension between involvement and confidentiality. The purpose was to inform discussions about meaningful participation of patients as co-researchers in rural research.

Methods: This qualitative research project was undertaken at a private rural rheumatology practice in Australia by an interdisciplinary team (doctors, nurse researcher). Twelve patients, recruited from a rural rheumatology practice, participated in two semi-structured interviews. One patient was unable to participate in the second interview. The first interview explored participants’ thoughts on co-researching, and in the second they responded to other participants’ thoughts. The interviews were conducted via phone or teleconference, depending on patients’ preference and technological abilities. Questions explored research experience, perspectives on co-researching and how they might resolve the tension between research involvement and confidentiality, particularly rurally. Data was iteratively analysed and themes interpreted.

Results: Participants’ perspectives on the tension can be understood in relation to their differing contexts for being concerned about the tension and differing approaches for addressing the tension. Regarding their differing contexts, most patients had prior involvement in research, across various fields including medical and non-medical. One had prior experience as a co-researcher. Regarding motivations for being involved in research, some patients were interested in current rheumatology research, such as pathophysiological drivers or lifestyle management options, some wanted to help the “greater good,” whilst others wanted to assist their local rurally-located rheumatologist. A small minority expressed that financial remuneration came into their thinking. Others noted interest in the personal benefit of trying experimental treatments. Whilst patients described different motivations, the differentiation between involvement as participant or co-researcher was not necessarily clear to them, and was a concept that took time for patients to grasp. Many patients felt rurality would influence the decision to be a co-researcher, both positively and negatively; some expressed that geographical isolation was prohibitive, whereas others stated they would like to be involved to ensure rural patients had a voice. When asked how rural researchers could enable patients to participate as co-researchers without exacerbating the tension, patients expressed the need for confidentiality decisions to remain the patient’s choice and for it to be an ongoing, informed discussion that was patient-centred. When asked regarding metropolitan research with rural co-researchers, patients encouraged clinicians to access the wealth of information present in rural communities, particularly via involving existing community networks. Furthermore, they expressed that many rural patients would be motivated participants, as well as a hope that working with rural co-researchers might encourage metropolitan clinicians to provide services rurally. Overall, participants viewed co-researching positively and desired to see greater rural involvement. However, patients remained on a spectrum of not being concerned to very concerned regarding the tension between confidentiality and involvement as a co-researcher. Those who had fewer concerns had differing solutions. Several felt that educating the community would empower other sufferers and increase awareness. Others emphasised the relational aspect with their rural care team and feeling comfortable in discussing their condition. Many felt that disclosure would not affect them in their communities or in their employment. Alternatively, a minority of patients expressed that they would not want to be named as a co-researcher, particularly due to confidentiality concerns. Interestingly, when patients that were comfortable with disclosure of their condition were challenged with the thoughts of those that were not, they recognised the concerns regarding confidentiality but did not alter their thinking.

Conclusion: Concern about the tension between involving patients and breaching their confidentiality was not uniformly high. However, this does not preclude the tension being a source of reflection for researchers planning to involve rural patients in rheumatology research. Rather, it highlights a vulnerability that risks exploitation if not engaged with sensitively. Thus, our findings provide a basis for ongoing reflections and conversations about (i) aligning meaningful involvement of patients’ personal motivations, concerns and roles in research, and (ii) creating conditions to build on, rather than exploit, relationships that engender goodwill towards research involvement.

REFERENCES: NIL.

Acknowledgements: NIL.

Disclosure of Interests: Michael McLucas NSW Regional Health Partners Consumer and Community Involvement Grant - non-pharmaceutical, Anne Croker NSW Regional Health Partners Consumer and Community Involvement Grant - non-pharmaceutical, Narelle Perry NSW Regional Health Partners Consumer and Community Involvement Grant - non-pharmaceutical, James Croker NSW Regional Health Partners Consumer and Community Involvement Grant - non-pharmaceutical.

© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.