Advocates for patients with kidney disease are calling on Health Secretary Robert F. Kennedy Jr. to go ahead and fire the members of the U.S. Preventive Services Task Force.
The American Association of Kidney Patients, whose corporate members include drugmakers Amgen, Eli Lilly, and Sanofi, has warred with the panel for years over whether to expand screening for kidney disease. The association wants it to; the panel says it’s studying the issue.
“The president and the secretary are committed to making America healthy again,” said Paul T. Conway, the kidney patients’ chair of policy and global affairs. “If that means throwing out things that have been there a while and shaking up the status quo, especially the medical status quo, no problem.”
The panel’s recommendations determine what insurers must cover without cost-sharing under a provision of the Affordable Care Act.
In a letter to Kennedy, the kidney association’s president, Edward V. Hickey III, says it’s lost faith the current members have kidney patients’ best interest in mind.
“The Task Force has not adequately considered all available evidence supporting kidney disease screening, including patient insight data, nor has it kept pace with new diagnostics and FDA-approved therapies that slow disease progression.”
The association says that, at a minimum, screening of patients with a family history of kidney disease, diabetes or high blood pressure should be standard.
Why it matters: Kennedy canceled a meeting of the expert panel in July and The Wall Street Journal later reported he planned to fire its members.
After the meeting was canceled, scores of medical groups, including kidney doctors, wrote a letter to top lawmakers in protest.
The medical groups said disrupting the task force would politicize it and undermine confidence in its recommendations.
“The loss of trustworthiness in the rigorous and nonpartisan work of the Task Force would devastate patients, hospital systems, and payers as misinformation creates barriers to accessing lifesaving and cost effective care,” they wrote.
But the kidney patients’ letter shows that some see an opportunity to advance their goals in Kennedy’s willingness to reconsider the status quo.
What’s next? Kennedy hasn’t detailed his plans since the Journal report on July 25. The task force typically would next meet in November.
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xCures, which uses artificial intelligence to collect and organize patients’ medical data, is launching a product that can help consumer health apps securely access patients’ medical records.
The launch will help advance individual access to medical records on the Trusted Exchange Framework and Common Agreement, an ecosystem for sending and receiving health data overseen by the Office of the National Coordinator for Health Information Technology, a division of the Department of Health and Human Services.
“The primary driver for this is getting me my data off of the network so that I can use it for my purposes,” xCures CEO Mika Newton told POLITICO.
Health app developers can license xCures’ product to allow patients to pull their medical data from multiple health systems into their apps. The new product can convert medical data into a usable format.
Security concerns have previously prevented apps from being able to access patient records. Health systems and electronic health record companies want to ensure that patients requesting records are who they say they are.
xCures works with CLEAR, an identity verification platform commonly found at airports, to confirm identities. To get access to their records, patients will have to submit a picture of a valid ID and complete a biometric face scan.
The company is collaborating with a health system, which uses its own dedicated app through which patients can access their medical records, though Newton declined to name which health system is involved.
TEFCA moves: xCures works with information broker Kno2, a qualified health information network, or QHIN, on TEFCA, to get patient data.
QHINs can request data from others on TEFCA to help facilitate treatment, payment for services, health system operations, public health, government benefit determination, and individual access to health records.
TEFCA is still in its early days. Even so, ONC reports that the ecosystem supports 41,000 unique connections to clinicians, hospitals, clinics, post-acute and long-term care facilities and public health departments.
Last year, Epic, a large electronic health records company — and also a TEFCA QHIN — said it would let patients access their health records.
While such technology can ease patient access to their medical data, it’s unclear how secure their data will be outside of regulated health institutions. Federal health data rules don’t protect consumer apps, raising questions about how secure patient data will be once it’s transferred out of electronic health records.
“We ensure the security and proper storage of all data on our platform. Our data hosting supports essential processes like normalization, structuring, and source verification, which are key value additions we provide,” said Newton.
He says his company requires app companies that license its individual access services to meet certain privacy and security standards. But once the data is transferred to the app, it is the responsibility of the app maker to protect it.