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

Talia Gutman, Allison Tong, Martin Howell, Kathryn Dansie, Carmel M. Hawley, Jonathan C. Craig, Shilpanjali Jesudason, Jeremy R. Chapman, David W. Johnson, Lisa Murphy, Donna Reidlinger, Sally Crowe, Emily Duncanson, Shyamsundar Muthuramalingam, Nicole Scholes-Robertson, Amber Williamson, Stephen McDonald, Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) Workshop Investigators, Richard Le Leu

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)1585-1594
Number of pages10
JournalNephrology Dialysis Transplantation
Volume35
Issue number9
DOIs
Publication statusPublished - 1 Sep 2020

Keywords

  • Consumer engagement
  • Consumer involvement
  • Patient engagement
  • Patient involvement
  • Patient research partner

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