I am a grateful kidney transplant recipient and a fulltime health care advocate. I spent six years on dialysis before receiving a phone call that changed my life forever in the summer of 2015.
Before I got that phone call, I had volunteered to participate in the clinical trial of a drug that showed promise in improving outcomes for dialysis patients with cardiovascular disease. Being part of a trial that could help my fellow warriors appealed to me, and I knew the researchers would ensure my health took priority over all other considerations in the study. I didn’t get to complete the trial because my name came up on the kidney transplant list, and I jumped at the chance to receive the gift of a healthy kidney.
I believe that patients need to be included in all aspects of research—from participating in studies to being partners in deciding what questions to ask and which outcomes are important. That’s why I am a member of PCORI’s Advisory Panel on Patient Engagement and served on the steering committee for PCORI’s 2016 annual meeting. PCORI is changing the culture of research, and we need to ensure that patient-centered engagement becomes the national standard for clinical research.
I believe that patients need to be included in all aspects of research—from participating in studies to being partners in deciding what questions to ask and which outcomes are important.
Last year, I was invited to join the Patient and Family Partnership Council of the Kidney Health Initiative (KHI) at the American Society of Nephrology. Since joining, I've learned that dialysis patients have not had many opportunities to participate in clinical trials, and minority populations are especially underrepresented. A crucial part of KHI’s mission is addressing these disparities and ensuring that patients who engage in clinical research are respected as full partners. KHI hosted a two-day public workshop to discuss the scientific, technical, and regulatory challenges to creating bioartificial or bioengineered alternatives to dialysis. Patients and care partners were there in force to ensure that patient preferences were acknowledged in every discussion.
Patient-centered clinical research will result in lower healthcare costs, better population health, and improved quality of life for many patients and care partners. To achieve this, we need to educate patients about the importance of participating in research and give them the tools and support they need to engage in research more effectively. Most importantly, relationships between researchers and the people who agree to work with them must be ongoing and mutually beneficial.
David White is a veteran of three types of kidney dialysis. He serves as Chair of the Kidney Health Initiative's Patient and Family Partnership Council. He also serves on the American Association of Kidney Patients Board of Directors and as Co-Chair of PCORI’s Advisory Panel on Patient Engagement. White has a BS in mathematical studies from Yale University and is pursuing a degree in health systems management from the University of Maryland University College.
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