Speaker: Patient input critical for ensuring equitable access to new dialysis technologies
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Holding patient insight as valuable, and thus expanding ways patients can participate in all stages of product development, is essential to ensuring equitable access to emerging dialysis technologies, an expert in patient advocacy said.
During his presentation at the virtual Innovations in Dialysis: Expediting Advances Symposium, Paul T. Conway, chair of policy and global affairs and immediate past president of the American Association of Kidney Patients, contended that over the past decade a shift has occurred in how researchers and other members of the medical community view the role of the patient. Increasingly, according to Conway, patients are viewed as partners and consumers.
Patients at the forefront
“Researchers now no longer look at patients as subjects,” he said. “They’re now co-investigators. Companies no longer see their prime client as large dialysis organizations. They know now that they need to work with patient advocates and advocacy organizations because some of their prime clients in the future, especially for home care and wearables, are the patients themselves ... This means that patients have a choice in the system to pick technologies that they find important to them in consultation with their doctor.”
For historically underrepresented groups, this shift to placing the patient at the forefront has the potential to be especially beneficial, according to Conway. As racial and ethnic disparities exist in health care, Conway said it is important to reach out to those groups who are disproportionately impacted by kidney disease early in the product-design process, value their opinions and continue this collaborative approach across the product development cycle at all stages.
Quality care for all patients
“This all goes to the much larger philosophical issue of defining quality care, especially for those who have not had access to care. At AAKP, we define quality care as health care that works on behalf of the patient so that the patient is empowered to pursue their aspirations,” Conway said. “[We must] view patients as people who need to be aided through a very complex process; the patient should not be diminished in terms of their intellectual capacity or ability to make sound choices. A doctor needs to take a look at a patient, no matter what their background is, and ask them the questions: What do you want to do? What are your goals and aspirations?”
According to Conway, initiatives such as KidneyX exemplify that the federal government is leading the way in promoting the idea that patient insight is valuable, again noting that the fundamental shift in the way patients are viewed changes the landscape for increased health equity.
“The shift determines how the FDA is going to approach regulatory decisions and risk-acceptance based decisions,” Conway said. “And ultimately, when a final product comes out, CMS has to be in a position of understanding that the patient-consumer voice may actually drive reimbursement decisions in a way that lobbyists from a large dialysis organization couldn’t even imagine 5 or 10 years ago. And that’s okay, because CMS must be responsive to the taxpayer and to the patients they serve.”
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Conway PT. Panel session III: Health equity in dialysis innovation. Presented at: Innovations in Dialysis: Expediting Advances Symposium; Aug. 22-24, 2021 (virtual meeting).
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