Principles and strategies for involving patients in research in chronic kidney disease: report from national workshops

• Published in: Nephrology, dialysis, transplantation Vol. 35; no. 9; pp. 1585 - 1594
• Main Authors: Gutman, Talia, Tong, Allison, Howell, Martin, Dansie, Kathryn, Hawley, Carmel M, Craig, Jonathan C, Jesudason, Shilpanjali, Chapman, Jeremy R, Johnson, David W, Murphy, Lisa, Reidlinger, Donna, Crowe, Sally, Duncanson, Emily, Muthuramalingam, Shyamsundar, Scholes-Robertson, Nicole, Williamson, Amber, McDonald, Stephen
• Format: Journal Article
• Language: English
• Published: England 01.09.2020
• Subjects: Australia - epidemiology; Biomedical Research - organization & administration; Biomedical Research - standards; Female; Humans; Male; Patient Participation - statistics & numerical data; Renal Insufficiency, Chronic - epidemiology; Renal Insufficiency, Chronic - therapy; Research Design - standards; Australia; consumer involvement; patient engagement; patient research partner; consumer engagement; patient involvement
• ISSN: 0931-0509; 1460-2385
• DOI: 10.1093/ndt/gfz076

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. 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. 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. 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.