Advancing Patient-Centered Research: Enabling the Patient Voice to Be Heard

The authors of “Patient and Caregiver Experiences and Attitudes about Their Involvement in Research in Chronic Kidney Disease,” published in this issue of CJASN, address an important research gap in which scant evidence exists (¹). Moreover, the research topic is very relevant to me on the basis of my personal experience as a research contributor.

Before discussing the merits and limitations of this study, it is important to acknowledge the authors’ previous contributions through the Standardized Outcomes in Nephrology initiative (songinitiative.org). Through their engagement with people living with kidney diseases and nephrologists, the researchers have identified discordance between what matters to patients versus nephrologists. For example, kidney transplant recipients have reported that being able to work post-transplant is very important to them (²). However, there are very few research resources allocated to this subject in the United States (³).

Gutman et al. contacted 32 patients or caregivers and were able to conduct interviews with 23 of them, myself included. During these discussions, the interviewers discovered six themes:

• Grappling with CKD diagnosis.
• Bearing the responsibility of involvement.
• Battling big agendas.
• Seeing the person behind the patient.
• Sensitivity to payment.
• Championing the patient voice.

I am focusing my comments on three of the themes.

Grappling with CKD Diagnosis

The interview respondents reported being overwhelmed by the burden of their illness. For someone living on dialysis, especially in-center hemodialysis, fatigue and poor quality of life are barriers to research participation. For someone who has CKD and is progressing to kidney failure, this is another barrier to research participation. These individuals are facing an uncertain future, and their time is limited as they navigate their uncertain future.

Seeing the Person Behind the Patient

This theme resonated most deeply with me. The researchers that I have enjoyed collaborating with create an environment of crossfunctional learning. Both the researcher and the participant gain something from the research project. One example stands out to me: I was a contributor to the project, My Dialysis Plan, which was initiated by a nephrologist and a person living with kidney disease (⁴). During this project, both researchers provided ample time to ask questions. I ended up learning why many people on in-center hemodialysis are not engaged in their care, and thus, the importance of the research project. Historically, in-center hemodialysis care planning has been top down, with minimal patient input.

Sensitivity to Payment

From my experience, payment for research participation is not an intrinsic motivator to take part. Rather, it is a measure of respect for the participant. It sends the message that you respect the individual’s time, even if the amount is nominal. Another measure of respect is offering the participant the option of being listed as a contributing author on the resulting research article. To illustrate this point, I participated in a 3-day Kidney Disease Improving Global Outcomes conference (⁵). Because I am self-employed, I made a financial sacrifice by taking 2 unpaid days off to attend. Conversely, I am certain the academic researchers did not have to take a similar action. Yet, when the Kidney Disease Improving Global Outcomes workshop article was published, I was not listed as a contributing author, nor was I consulted on my preference beforehand.

Gutman et al. correctly acknowledge the limitation of their study. The people living with kidney disease interviewed are recognized names in the patient advocacy community. Thus, the interview participants do not represent the average person living with kidney disease. It would be valuable to hear from people who are not as active in the community or who have made the decision not to contribute to research. I have observed a tendency for researchers to go to the same well again and again when looking for participants in research. To avoid this bias, the interview participants made a very good recommendation: researchers should have an ongoing list of potential research collaborators. Moreover, this list must represent the demographics of the population of patients with kidney disease. If not, how can the nephrology community credibly serve the needs of the patient community?

In 2021, the National Kidney Foundation (NKF) published an article in American Journal of Kidney Diseases titled “Research Priorities for Kidney Related Research—An Agenda to Advance Kidney Care: A Position Statement from the National Kidney Foundation” (⁶). As a part of this project, the NKF conducted a series of research roundtables with a broad group of stakeholders including people living with kidney disease, nephrologists, researchers, etc. The NKF was effective at recruiting patient voices that reflected the kidney disease community. During these roundtables, I not only felt heard, but that my ideas were acted upon. During the meetings, I advocated for research into cognitive impairment across the spectrum of kidney disease. I have made similar requests over the last decade, but to no avail. Once the meeting was concluded, one of the nephrologists who attended told me she had requested cognition be studied, but it required research funding. To the nephrologist’s credit, she acknowledged she was unaware cognitive impairment was an unmet patient need. Her humility and willingness to advocate for patient-centered research is what is needed so research advances patient-centered care.

Disclosures

K.J. Fowler reports having consultancy agreements with Akebia, Bayer, eGenesis, Gilead, Hansa Biopharma, Natera, Otsuka, Palladio Biosciences, Responsum for Chronic Kidney Disease, Talaris, Travere Therapeutics, and Veloxis; reports receiving honoraria from the American Society of Nephrology, Kidney Research Institute, and Evergreen Nephrology; and reports serving as a scientific advisor or member of CJASN Editorial Team as a Patient Voice Editor, the Global Renal Exercise Group, International Society of Nephrology, Kidney Health Initiative Board of Directors, Kidney Research Institute, and NKF Kidney Health Community and Kidney Advisory Committee.

Funding

None.