One message was loud and clear from federal healthcare officials in Orlando, Florida, this week at the largest gathering of health IT experts: Patient data belongs to patients.
Officials put industry stakeholders on notice over efforts to block patients' access to their data. The Department of Health and Human Services made public several proposed rules aimed at increasing consumer access to their health data, but whether these regulations lead to the long-held goal of industrywide interoperability will take years to determine.
"It’s long overdue for the healthcare industry to be a part of the smartphone economy and enable patients to access their health data through an app of their choice, at no additional cost," said Donald Rucker, M.D., national coordinator for health IT, closing out the Healthcare Information and Management Systems Society's (HIMSS) annual conference and exhibition on Friday.
Addressing HIMSS attendees during a morning keynote with HIMSS CEO Hal Wolf today, Rucker reiterated the message given by Seema Verma, Centers for Medicare & Medicaid Services administrator, when she spoke earlier this week and made it clear that health data belongs to patients.
“Hospitals have invested billions in electronic health records, systems that don’t meet clinicians’ needs, let alone the needs of patients. Some hospitals have to ask permission from EHR vendors to use their data,” Verma said during an afternoon keynote address at HIMSS earlier this week. “The idea that patient data belongs to providers or vendors is an epic misunderstanding. Patient data belongs to patients.”
ONC's proposed rule defines exceptions to data blocking, and fines that may be associated with the practice, as mandated by the 21st Century Cures Act.
In a separate rule, CMS is requiring that all health plans doing business in Medicare, Medicaid and through the federal exchanges share claims and other health information with patients electronically via an API by 2020.
“21st Century Cures required ONC to clarify what information blocking is and what it is not. We won’t tolerate it anymore. Those who continue down the road will see fewer opportunities to engage. Information blocking is a thing of the past,” Verma said.
“Congress put the kibosh on information blocking,” Rucker said, also noting the passage of the Cures Act in 2016. “There are two goals: open up the data and EHRs to empower the patients and end information blocking. Modern APIs (application programming interfaces) drive the whole smartphone economy, and this is missing in healthcare.”
The proposed information blocking rule calls on the healthcare industry to adopt standardized APIs, which will help allow individuals to securely and easily access structured electronic health information using smartphone applications. While there are some allowable costs in setting up that data exchange, the cost has to be rolled into the cost of providing the medical service, Rucker said.
“There should be no additional charges to patients or their apps. Patients should be able to attach their smartphone to the providers’ endpoint and get their medical data. Period. And with an app of their choice. And that’s what modern technology allows,” he said.
Rucker noted that this new smartphone economy in healthcare will likely spur new business models.
“I think when you look at the rest of the economy and what smartphones have done, there have got to be some lessons. If you look at Uber and Lyft and how many APIs they had to put together to develop a lower cost business model, there will be some of that,” he said.