International perspectives on patient involvement in clinical trials in nephrology

The involvement of patients in nephrology clinical trials is limited despite their ability to prioritize research, help with study design, participation, and implementation of results. The aim of this position paper is to review the need for and challenges of patient involvement; to assess the present situation of patient involvement; and to describe the role of International Society of Nephrology in promoting patient involvement.

Patient involvement across from priority setting through to implementation of the trial findings can ensure that the evidence generated aligns with their priorities and maximizes recruitment and retention, as well as assess its impact on practice and policy. This has been demonstrated in United Kingdom, Australia, Canada, and United States; however, little is known about the involvement of patients in trials internationally. Barriers to patient involvement includes the patients’ lack of awareness of opportunities to participate, knowledge of clinical research, lack of time, ill health, and lack of initiative among researchers to provide opportunity.

To assess patient involvement in clinical trials in kidney disease, the International Society of Nephrology surveyed the members of the regional boards to which 177 members responded. The survey demonstrated the variability in patient involvement among different regions and highlighted the lack of nominated leads and formal mechanisms of patient involvement. Though members were keen to communicate with patients, social media was underutilized. The International Society of Nephrology will support patient involvement by developing tools and creating better awareness, to promote high-quality clinical trials in nephrology.