This article is more than 5 years old. Information may no longer be current.
Innovation, patient-centered focus pivotal in growth of ASN’s Kidney Health Initiative
Click Here to Manage Email Alerts
When the American Society of Nephrology’s Kidney Health Initiative was established in 2012, there was a greater need for innovative techniques and treatments among the kidney community. Since that time, the program has built upon its mission of advancing scientific understanding of kidney health and patient safety implications for new and current medical products and fostering the development of new therapies.
“Our most significant achievements have been in convening the kidney community to catalyze a culture of innovation,” Raymond C. Harris Jr., MD, FASN, the co-chair for the Kidney Health Initiative (KHI), told Nephrology News & Issues. “For example, as the artificial kidney’s profile has grown on the national stage, our work in vascular access end points and technology road-mapping are important foundational efforts. Vascular access is critical for the success of any future bio-artificial kidney.”
Harris said a forged partnership with the FDA led to resolving many issues in the kidney community that included frustration with the lack of innovation, as well as with the FDA itself.
“Seven years in, the environment and the relationship has completely changed,” Harris said. “Many of our end point publications have FDA co-authors, signaling the most productive ways for industry and researchers to direct their efforts. In part because of KHI’s role as a convener and catalyst, we are seeing more clinical trials in glomerular diseases and developing an artificial kidney has become U.S. government policy.”
Patient-centered focus
An increased focus on patient-centered development has played an important role in further development of the program’s mission.
Harris, who is in his first year of a 3-year term as KHI co-chair, said that at the program’s inception, the discussion on patient-centered development was non-existent. The change came with the creation of the KHI Patient and Family Partnership Council (PFPC), which started through the efforts of the late Celeste Castillo Lee, a member of the program’s board of directors. Harris said the council’s mission is to ensure “the patient voice is integrated into drug and device development.”
David M. White, a kidney transplant recipient and the chair of the PFPC, told Nephrology News & Issues that the patient voice and perspective is important when it comes to the success of the program.
“We take our responsibility to the people and families that we represent seriously,” White said. “As we share our groundbreaking work with our networks, we generate interest and increase awareness of the many opportunities that exist for patients and care partners to have a role in improving their care and the care of the patients who will follow in their footsteps. Sometimes, we can even give hope to people who really need it.”
Harris said the council is seen as a model for how to give patients and care partners a meaningful voice in innovation.
“You can see their impact in the slate of projects we have now and at the annual meetings we have put on the past few years,” he said.
Future goals
Harris said he has four key objectives he wants to address during his first term. These include:
- pivoting KHI’s efforts from focusing on discrete disease areas to more universal projects that impact the wider population;
- investing heavily in the development of “on-study” culture in nephrology to take advantage of the current climate in the kidney community;
- continual publishing of end points, clinical trial design and technology road-mapping; and
- continued work with the FDA to use patient preferences, including novel renal devices and defining biomarker roadmaps, for the treatment of acute kidney injury.
As for future advances in patient-centered care, White said more can be done for patients in the program.
“We need to broaden our reach in all stakeholder communities but, most importantly, medical product companies, government agencies and the advocacy organizations that we proudly serve,” he said.
Harris said it is “a unique moment for innovation and discovery in the kidney community.”
“The Advancing American Kidney Health initiative provides us a once-in-a-lifetime chance to deliver real change to people with kidney diseases,” he said. “KHI and our 105 member organizations are committed to delivering those innovations and implementing our refreshed mission to catalyze innovation and the development of safe and effective patient-centered therapies for people living with kidney diseases.” – by Earl Holland Jr.
- For more information:
- Raymond C. Harris Jr., MD, FASN, is co-chair of the KHI and the associate director of division of nephrology at Vanderbilt University Medical Center.
- David M. White is the chair of the KHI PFPC and is the community outreach coordinator at The Rogosin Institute.
Disclosures: Harris reports no relevant financial disclosures. White reports he owns stock in Proteon Therapeutics.