Opportunities for Engaging Patients in Kidney Research

Abstract

Purpose:The purpose of this review is to provide a summary of the rationale for engaging patients in research as well as to review the established and envisioned advantages and strategies for patient-researcher partnerships. The authors of this article, which include a patient and 4 researchers in kidney disease, discuss the expected benefits and opportunities for patient engagement in their respective research programs. The 4 research programs span the spectrum of kidney disease and focus on enhancing bone health, increasing living donor kidney transplants, improving medication adherence, and preventing kidney transplant rejection.Sources of Information:The sources of information for this review include published studies on the topics of patient engagement and the 4 research programs of the new investigators.Key Findings:(1) Patient, health care provider, and researcher partnerships can contribute useful insights capable of enhancing research in kidney disease. (2) Regardless of the research program, there are various strategies and opportunities for engagement of patients with lived experience across the various stages of research in kidney disease. (3) Envisioned advantages of patient-researcher partnerships include: targeting patient-identified research priorities, integrating patients’ experiential knowledge, improving study design and feasibility through patient-researcher input, facilitating dissemination of research findings to other patients, effectively responding to patient concerns about studies, and inspiring researchers to conduct their research.Limitations:The limitations of the current review include the relative scarcity of literature on patient engagement within the field of kidney disease.Implications:The findings of the current review suggest that it will be important for future studies to identify optimal strategies for patient engagement in setting research priorities, study design, participant recruitment, execution of research projects, and knowledge dissemination and translation.

Patient-Reported Outcomes in Patients with Chronic Kidney Disease and Kidney Transplant—Part 1

“…Use of PROMs can improve the assessment of disease burden among patients with CKD ( 12 , 14 ). As such, incorporation of PROMs in routine clinical care would be an important tool toward facilitating patient-centered care ( 26 – 29 ). Moreover, involving patients in defining clinical and research priorities has the potential to enhance the relevance and acceptability of research from the perspective of all stakeholders, including patients, the public, clinicians, funding and regulating agencies, and policy makers ( 29 , 30 ) In addition, establishing a shared platform of understanding may improve patient-provider communication, increase adherence, and improve clinical outcomes ( 31 , 32 ).…”

Engaging Patients and Family Members to Design and Implement Patient-Centered Kidney Disease Research

“…[10][11][12][13][14][15][16] As an extension of patient-centered care to research, PCOR is expanding in kidney disease with several studies using this approach to improve care. [17][18][19][20] Kidney disease PCOR can help promote patient-centered care in kidney disease settings and can also help the kidney disease community meet the goals of the 2019 CMS Treatment Choices Model 21 and Advancing American Kidney Health initiative 22 that aim to improve patient outcomes. Recent research suggests that patients with kidney disease prioritize very different outcomes than health care professionals, 19,23,24 and including patients and family members as research partners may help address this discordance as well as improve kidney disease care quality.…”

‘Knowledge is power’: A framework for partnering with consumers in developing and delivering a scientific meeting in nephrology

“…There is a growing movement in nephrology, and other medical specialities, towards meaningful consumer engagement in research. Involving consumers (patients, carers and family members) throughout all stages of the research process can help to align research with consumer priorities, increase participant recruitment and retention, and facilitates dissemination of results, which ultimately enhances the impact of research on health practice and policy . Many scientific meetings are convened each year to disseminate current evidence‐based practice and new research about kidney disease.…”

“…Involving consumers (patients, carers and family members) throughout all stages of the research process can help to align research with consumer priorities, increase participant recruitment and retention, and facilitates dissemination of results, which ultimately enhances the impact of research on health practice and policy. [1][2][3][4][5][6] Many scientific meetings are convened each year to disseminate current evidence-based practice and new research about kidney disease. As the individuals who participate in research as subjects and for whose ultimate benefit it is conducted, patients and caregivers are being increasingly involved in these events.…”