The Office of the National Coordinator for Health Information Technology has reiterated its intention to promote and support consumer empowerment, even in the wake of backlash against a controversial proposed change to a key Meaningful Use Stage 2 rule.
“Our commitment to consumers and consumer health information is unwavering,” national health IT coordinator Dr. Karen DeSalvo said during an ONC press conference today. The bland statement is not surprising, given that federal officials are not allowed to address specific criticisms while a rulemaking is in progress.
As MedCity News reported, HHS proposed Friday to roll back the Stage 2 measure that calls for 5 percent of patients to “view, download or transmit” to a third party data from their electronic health records, either through a Web portal or some other electronic means. If the changes go through, providers would just have to have one single patient do so throughout each year’s Meaningful Use reporting period going forward.
Patient advocates, including DeSalvo’s predecessor Dr. Farzad Mostashari, were incensed, and called for a “day of action” on which large numbers of patients would demonstrate demand for the service by requesting copies of their records.
DeSalvo and her colleagues took the criticism in stride, or at least diplomatically, referring to the 60-day public comment period that opens tomorrow. “What’s really exciting about the last few days is the dialog that’s ensued,” DeSalvo said.
The national coordinator recommended that consumer advocates sit down with their friends and family members to educate people about the right to access their patient records, and that doctors and hospitals also start publicizing their EHR portals because they would like patients to be more engaged. “I think everybody wants the same thing. I really do,” DeSalvo said.
Lucia Savage, chief privacy officer at ONC, referred to the updated privacy and security guide that the office released Monday. “There’s a really good section about how to communicate with your physician,” she said. “We know consumers want to do that.”
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Along these lines, ONC officials talked up interoperability of health data in general. The agency today announced the availability of $1 million in grant funding, pulled from ONC’s general budget, to support health information exchange at the community or state level.
Ahmed Haque, director of ONC’s Office of Programs and Engagement, said that this program and others announced earlier this year are focused on engaging patients. He added that ONC will take applications for the next 6o days and is anticipating the grants to start around Aug. 14.
