The Trump administration wants Americans to have greater access to their medical data, a top health official told attendees yesterday at the HIMSS annual conference and exhibition yesterday in Las Vegas.
The question of how information from medical records can be shared securely with patients and among different healthcare providers has long vexed the industry. While many healthcare records have been digitized in the past decade, hospitals and doctors haven’t yet realized broad productivity gains from the transformation.
That’s partly because even digital records are often limited to one healthcare provider’s system, and competing systems don’t communicate with each other.
“At a time when health-care data is being generated from so many sources, too often that data runs into the hard walls of closed systems that hold patients, and their information, hostage,” says Seema Verma, administrator of the Centers for Medicare and Medicaid Services.
Verma was introduced by Jared Kushner, President Trump’s son-in-law and senior adviser, who leads the White House Office of American Innovation. He says the initiative was the result of six months of work with health technology firms, insurers, doctors, hospitals and patient groups.
The high-profile announcement signals a willingness to tackle a knotty problem past efforts have failed to untangle. A law enacted in 2009 as part of an economic-stimulus package provided billions of dollars in subsidies for healthcare providers to switch from paper records to electronic software.
That plan, too, envisioned sophisticated networks that could relay patient data seamlessly from a family doctor to a hospital surgeon to a physical therapist. The idea, called “interoperability” in the industry’s jargon, has never become reality on a wide scale. Competing data formats and incentives to hold on to customers led medical-software companies to create systems that don’t talk to each other.
“America needs better patient access to data and interoperability now,” Kushner noted.
The Trump administration’s announcement was thin on details, and it’s unclear if it will nudge the health system any closer to exchanging data more smoothly. A new initiative called MyHealthEData “is designed to empower patients by making sure they control their health data,” according to materials from CMS.
In an interview, Verma said the administration is working on a timeline for the initiative. She says elements of the requirements to make it easier for patients to access their records and for providers’ systems to talk to each other will be included in upcoming rules from CMS, including ones for ACA health plans, for Medicaid plans, and for providers in Medicare.
“We’re going to be using every lever that we can,” she says. “There is the expectation that patients have access to their health records.”
Other parts of the plan are intended to give patients on Medicare, the government health insurance program for Americans 65 and over, better access to their claims and prescription data.
The Department of Health and Human Services invested more than $35 billion in health information technology since 2009, according to a Government Accountability Office report last year. Only a minority of Medicare patients that could access their health records did so. Some who did found the experience frustrating, with multiple passwords needed for different providers’ software, and information that was fragmented, unwieldy, or incorrect, the GAO report said.
The Trump administration has portrayed improving data access as the first step in orienting the healthcare system around patients and trying to encourage competition.
“Patients ought to have control of their records in a useful format, period. When they arrive at a new provider, they should have a way of bringing their records,” Health & Human Services Secretary Alex Azar noted on Monday.
Improved electronic records could also give researchers vast data sets to comb for insights on how to improve care, says Lloyd Minor, dean of the Stanford University School of Medicine.
Health data “is very siloed within those electronic medical record systems, so it’s not accessible for the type of deep learning and machine learning approaches” that have driven innovation in other industries, Minor says.
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