Senate Committee Spotlights Patient-Generated Health Data
- Patient-generated health data and the infrastructure required to support its use will be core topics this week on Capitol Hill. The U.S. Senate Committee on Health, Education, Labor and Pensions (HELP) will meet on Sept. 16 to hear testimony on enhancing care through patient access to their medical records. Witnesses are expected touch upon usability of EHR systems and the potential to tap health data in pursuit of precision treatment options for patients.
Sen. Lamar Alexander (R-TN) chairs the HELP committee with Sen. Patty Murray (D-WA) serving as ranking member. This week’s hearing will be the latest in a series held by the committee on improving EHRs for doctors and their patients.
“Our goal, through the hearings and our committee’s bipartisan working group, will be to identify the five or six steps we can take to improve electronic health records — technology that has great promise, but has, through bad policy and bad incentives, run badly off track,” said Alexander in June while introducing the series.
“If we want to continue to improving the quality and value of healthcare patients and families receive, we absolutely need to strengthen our nation’s health IT infrastructure,” Murray added.
Scheduled to appear on this week’s panel are Raj Ratwani, PhD, from MedStar Health, Eric Dishman from Intel, and Kathy Giusti from the Multiple Myeloma Research Foundation (MMRF).
Ratwani led a team of researchers who published a study Sept. 8 in the Journal of the American Medical Association finding that more than one-third of electronic health record vendors failed to follow usability testing regulations established by the Office of the National Coordinator for Health IT. Poor EHR usability can lead to frustration on the part of clinician users and potential patient safety risks, according to the study. “Enforcement of existing standards, specific usability guidelines and greater scrutiny of vendor processes may be necessary to achieve the functional and safety goals for the next generation of EHRs,” the report concludes.
Dishman, Intel’s general manager for Health and Life Sciences, a survivor of kidney cancer, is a proponent of using technology to help deliver care wherever needed. A recent initiative is Intel’s creation of the Collaborative Cancer Cloud, which connects Oregon Health & Science University with other universities in Boston and Austin, Texas. In a blog post announcing the initiative, Dishman wrote, “Instead of going through painful chemotherapy that can kill healthy cells along with cancerous cells, what would happen if those patients were able to be treated as individuals based on their specific genome sequencing, and a precision treatment plan could be tailored specifically for their disease?”
Giusti, a multiple myeloma patient, founded MMRF in 1998 and leads the foundation’s work in establishing collaborative research models in the areas of tissue banking, genomics and clinical trials. She is a member of President Obama’s Precision Medicine Initiative Working Group. She noted in a recent guest post for Forbes.com that many patients are opting to share their gene-sequencing data and other health information in hopes of advancing medical research. “Industry, academia, government and the entire cancer community must come together to share this precious information, or it risks being left unused and unapplied,” Guisti wrote.
