Continuing in its bold move up the ladder of electronic health record (EHR) interoperability, the Centers for Medicare and Medicaid Services (CMS) and the Office of National Coordinator for Health Information Technology (ONC) jointly finalized two rules on March 9, 2020 that were originally proposed February 11, 2019. The rules are designed both to allow patients access to their own records and data via smartphone apps and to provide strong deterrents to those who would block data.
In a story that has transcended the kidney community and touched the mainstream, David Ayres, a 42-year-old kidney transplant recipient and director of operations at the Mattamy Athletic Centre, a local arena in Toronto, entered an NHL game on February 22nd between the Carolina Hurricanes and Toronto Maple Leafs in Toronto, Canada. When two of the Hurricanes goalies left the game with injuries, Ayres, the emergency backup goalie – a position that is almost never used – was called in to play the remaining 28 minutes of his first ever NHL game. He went on to save 8 of 10 shots and lead the Hurricanes to a 6-3 victory. Even fans of the Toronto Maple Leafs cheered him on, as he is a native of nearby Whitby, Ontario.
The third day of the ASN Kidney Week Annual Meeting included a heavy emphasis on the patient perspective of kidney disease. Three concurrent sessions on Saturday afternoon included speakers living with kidney disease. One of those sessions was the Celeste Castillo Lee Memorial Lecture, a unique lecture amongst medical society meetings. Named for a visionary member of the Kidney Health Initiative (KHI) Board of Directors, an advocate for people with kidney diseases, and founder of the KHI Patient and Family Partnership Council, the lecture elevates the patient perspective during the kidney community’s most prestigious meeting.
Asking people with kidney failure what matters to them is critical for patient centered innovation. If that information can be collected in a scientifically rigorous way, it can inform industry and regulatory decision making.
The Kidney Health Initiative (KHI) is launching a new project in collaboration with the US Food and Drug Administration (FDA) to collect patient preference information on innovative renal replacement therapies (RRT). The three-year project, funded by the FDA, will produce a survey that captures scientifically valid patient preference and risk tolerance data from people with kidney failure to drive innovations in RRT. This information is increasingly important as innovation accelerates in the kidney community. The Advancing American Kidney Health initiative identified this need, directing the FDA to “develop a new survey to gain insight into patient preferences for new kidney failure treatments”.
Kidney News Online reached out to Kevin Fowler to speak about his upcoming talk on how CJASN has incorporated Patient Voice into a monthly feature in the journal at the 2019 Council of Science Editors Annual Meeting on the topic of “Patient Engagement in Scholarly Publishing” on May 6th in Columbus, OH. Mr. Fowler is a Patient Voice Editor for CJASN and will be presenting along with Christine Laine, MD, MPH, FACP, Editor-in-Chief, Annals of Internal Medicine Senior Vice President, American College of Physicians and Bill Silberg, Director of Communications, Patient-Centered Outcomes Research Institute (PCORI).
Following an aspirational policy-oriented kick-off at Kidney Week, I found that the second day of Kidney Week focused on the most important aspect of what we do: our patients. From the public-private partnerships including KidneyX and Kidney Health Initiative (KHI), to the CMS proposed payment changes, to the global challenges facing nephrology, the common sentiment has been simple: we must not forget our efforts to keep the patient at the center and include patient participation and insight.