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What Patients Teach Us About Patient Engagement in Research.

“Nihil de nobis, sine nobis,” or “nothing about us, without us,” is a phrase that dates back to the early 1500s when it was used to convey the idea that policies should not be established without full and direct participation of members of groups that would be affected by the policies. In the 1990s, the phrase was used in advocacy efforts for people with disabilities (1), and more recently, it has been used by patients to communicate the importance of their active engagement in all stages of clinical research (2). Although the value of incorporating into research the perspectives, preferences, and expertise of people living with the condition being studied seems obvious, this has only recently become a priority. In the United States, research funded by the Patient-Centered Outcomes Research Institute (PCORI), established in 2010, requires patient engagement, which PCORI defines as “meaningful involvement... throughout the entire research process—from planning the study, to conducting the study, and disseminating study results” (3). The National Institutes of Health is increasingly involving patients in the planning and implementation of research studies, as is the pharmaceutical industry (4). However, despite this growing interest, patient engagement is not yet a routine component of clinical investigation. In this issue of CJASN, Gutman and colleagues report their findings from semistructured interviews with both adult patients with CKD and caregivers, each of whom had experience with research engagement (5). The previous research engagement by the 23 participants (18 patients and five caregivers recruited from Australia, the United States, the United Kingdom, and Denmark) included serving on advisory groups, steering committees, and expert working groups, and occurred at a variety of stages of research, including planning and conducting research projects, evaluating results, and disseminating findings. Interestingly, despite an extensive list of research contributions, none of the participants were categorized as an investigator in prior research, a role for patients that has been increasingly encouraged and facilitated by advocacy groups and some funders (6,7). The authors used rigorous qualitative methods to identify themes and subthemes from the interviews with the goal of informing strategies to strengthen patient engagement in research. This effort complements a previous report by these authors from facilitated workshop breakout group discussions that included both patients and researchers (8). Fully consistent with the premise of patient engagement, the author groups for both studies included at least one patient with CKD. From the patient interviews, the authors identified six themes that, for most patients, were framed as issues that require attention to improve patient engagement in research: (1) grappling with the diagnosis of CKD, (2) bearing the responsibility for involvement, (3) battling big agendas, (4) seeing the person behind the patient, (5) sensitivity to complexities of payment, and (6) championing the patient voice. The subthemes, the illustrative quotations, and the recommendations made by the participants are numerous, and several stand out as particularly noteworthy. First, some participants identified stigma and shame associated with a diagnosis of CKD as a barrier to engaging in research, and expressed their sense that CKD is often considered to be the fault of the patient. The perception of CKD as a “non-sexy” disease, a description used by one participant, has been identified by professional and patient advocacy organizations as a reason for the disproportionately low funding for research in kidney disease relative to its prevalence and associated burden. Efforts to correct these misperceptions and eliminate stigma should be prioritized by the nephrology community for obvious reasons, only one of which is the negative effect on research. The authors’ impression was that CDK-related stigma and shame were concerns of participants from the United States, in particular. An additional barrier to research engagement articulated by participants from the United States is a lack of empowerment among patients. The participants attributed this to the low prioritization of patient education by large, financially motivated health systems and dialysis providers, which, in turn, leads to a passive approach by patients to health care, including research. Second, participants emphasized a need to “change the culture” so involving patients in research is not “simply ticking a box” to meet a requirement, but rather something truly valued by researchers. Based on this editorialist’s personal experience as a researcher, it seems likely that as investigators increasingly partner Renal-Electrolyte and Hypertension Division, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, and Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania