Background Slow recruitment and poor retention jeopardize the reliability and statistical power of clinical trials, delaying access to effective interventions and increasing costs, as commonly observed in nephrology trials. Involving patients in trial design, recruitment and retention is infrequent but potentially transformational. Methods We conducted three workshops involving 105 patients/caregivers and 43 health professionals discussing patient recruitment and retention in clinical trials in chronic kidney disease. Results We identified four themes. ‘Navigating the unknown’—patients described being unaware of the research question, confused by technical terms, sceptical about findings and feared the risk of harm. ‘Wary of added burden’—patients voiced reluctance to attend additional appointments, were unsure of the commitment required or at times felt too unwell and without capacity to participate. ‘Disillusioned and disconnected’—some patients felt they were taken for granted, particularly if they did not receive trial results. Participants believed there was no culture of trial participation in kidney disease and an overall lack of awareness about opportunities to participate. To improve recruitment and retention, participants addressed ‘Building motivation and interest’. Conclusions Investigators should establish research consciousness from the time of diagnosis, consider optimal timing for approaching patients, provide comprehensive information in an accessible manner, emphasize current and future relevance to them and their illness, involve trusted clinicians in recruitment and minimize the burden of trial participation. Participation in clinical trials was seen as an opportunity for people to give back to the health system and for future people in their predicament.

Background There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. Methods We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically Results Five major themes emerged. ‘Respecting consumer expertise and commitment’ involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients ‘in the loop’. ‘Attuning to individual context’ required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. ‘Harnessing existing relationships and infrastructure’ meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. ‘Developing a coordinated approach’ enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. ‘Fostering a patient-centred culture’ encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. Conclusions Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.

Patients, caregivers and family members are being increasingly involved in research, including as equal delegates in scientific meetings and conferences. 1 As the people that research aims to help and