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

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.

Epidemiology research to foster improvement in chronic kidney disease care

“…r e v i e w S Luo and ME Grams: Epidemiology research in kidney disease conduct of research studies, and the personalization of tools for CKD self-management such as smartphone applications. [112][113][114][115][116][117] Global initiatives are ongoing to reduce barriers to patient involvement in epidemiology research, such as patient uncertainty over their role in study design and guideline development and concerns from the academic community. 116,118,119 In Australia, the Standardized Outcomes in Nephrology initiative outlined practical steps to systematically implement consumer engagement in the management and research of kidney disease and to establish a set of core outcome measures on the basis of the shared priorities of patients, caregivers, clinicians, researchers, and policymakers.…”

“…[112][113][114][115][116][117] Global initiatives are ongoing to reduce barriers to patient involvement in epidemiology research, such as patient uncertainty over their role in study design and guideline development and concerns from the academic community. 116,118,119 In Australia, the Standardized Outcomes in Nephrology initiative outlined practical steps to systematically implement consumer engagement in the management and research of kidney disease and to establish a set of core outcome measures on the basis of the shared priorities of patients, caregivers, clinicians, researchers, and policymakers. 113,120 In Canada, the New Investigators in the Kidney Research Scientist Core Education and National Training Program engages patients in research to improve kidney disease outcomes and to promote the use of patient-reported outcome measures in kidney practice.…”

Novel trial strategies to enhance the relevance, efficiency, effectiveness, and impact of nephrology research

“…5 There have also been collaborative efforts to identify principles and strategies for effective consumer involvement in chronic kidney disease research, including clinical trials. 6 Although there are many benefits to consumer engagement, there are also a number of barriers that need to be overcome to ensure a smooth collaborative process. These obstacles include access to training, resources and educational opportunities for both researchers and consumers, reimbursement for consumers to attend meetings and scientific conferences (including registration, travel, accommodation, and meals), and appropriate access to technology for consumers to connect with other members of the research team.…”

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

“…13 It is increasingly recognized that a patient-centered approach in kidney disease must occur to improve patient education and outcomes. [14][15][16][17][18][19][20] End-Stage Kidney Disease (ESKD) is a chronic illness that occurs when kidneys stop working and is usually caused by diabetes and hypertension. 21 ESKD is an international and American public health crisis.…”