Apps may need to move beyond aggregation for APIs to catch on

The Trump administration's solution to the vexing problem of data exchange seems simple in concept: Let patients download their medical data onto smartphone apps and carry it around with them from provider to provider.

The big unknown: Will patients take advantage of that capability, which is supported by technology requirements in HHS final rules?

Early projects exploiting the technology—called application programming interfaces—have had mixed success. That may be because most of the apps available today, while convenient for viewing data, don't yet do much beyond that.

"This type of functionality has been out there," Dr. Christopher Longhurst, chief information officer at UC San Diego Health, said of APIs that link patients' health records to apps. "The real question is: Will the developer community build things that add value to patients in the healthcare process?"

Apps in many ways underpin long-awaited interoperability and information-blocking rules issued in early March by HHS' Office of the National Coordinator for Health Information Technology and the CMS. The companion rules will require healthcare providers and insurers to adopt standard APIs—protocols that connect various types of software, such as electronic health record systems and smartphone apps, to one another.

Some hospitals and health systems are already offering patients the option to download their medical data via APIs, though there's a limited number of apps on the market that link up to them today.

Under the rules, the Trump administration envisions developers creating a wide range of apps from which patients can choose to download and upload their data.

Rush System for Health in Chicago has for years been sharing data with patients via apps, offering patients access to medical data through Apple's health records feature and data-aggregation apps like 1upHealth.

"The data belongs to the patient," said Dr. Shafiq Rab, Rush's CIO. "It's all up to the patient. … If the patient wants that (data exchange), we can enable that."

Rush was one of the first health systems to add Medicare's Blue Button 2.0 API—a data-sharing interface that the CMS launched in 2018—to its patient app, called My Rush Mobile, which the system presented to agency officials at the White House that same year.

The CMS has pointed to Blue Button 2.0 as a first step toward healthcare data-sharing with APIs. The program has spurred creation of roughly 50 apps that hook up to beneficiaries' claims data to help users find appropriate health plans, make physician appointments and organize medical data.

But a key concern with the API approach is data privacy since app developers will not be held to stringent HIPAA requirements. Blue Button 2.0 last year ran into its own privacy misstep after discovering a bug that may have exposed some beneficiary information. That hasn't stopped the CMS from talking up the success of the project.

More than 53,000 Medicare beneficiaries have downloaded at least one of those apps, the CMS wrote in its interoperability rule. There are around 60 million Medicare beneficiaries in the U.S.

Rush's patients covered by Medicare can use the My Rush Mobile app to download and share previous years of claims data with their physician, including previous primary-care treatments and prescriptions. Rab said about 19,000 patients have downloaded the My Rush Mobile app, about 1,000 of whom are on Medicare.

But while sharing data via apps and APIs sounds appealing, apps that link up to EHRs today largely haven't caught on with patients.

Those types of apps are "struggling to gain traction in terms of utilization," said Michael Abrams, managing partner at healthcare consultancy Numerof & Associates. "Having a suitable API … is necessary, but not sufficient, to really create interest and utilization."

He noted that some companies have already tried—unsuccessfully—to launch data-aggregation services for patients' medical data. Microsoft Corp. last year shuttered its personal health record service, called HealthVault; the web-based tool lets patients aggregate health records.

In fact, just 0.7% of patients have downloaded medical data from their provider's patient portal to an app via APIs, according to a study published in JAMA Network Open last year, which studied 12 health systems that offered the option to patients.

Apps that help patients aggregate their medical records "can't focus exclusively on traditional health records," Abrams said. "They need to make it easy to integrate health records with other external and patient-generated data," such as data from genetic testing and wearable devices, and synthesize the information to provide patients with health insights.

Most patients who had downloaded their medical data with APIs were using Apple's health records feature, said UCSD Health's Longhurst, a co-author of the article in JAMA Network Open. UCSD Health was among the first health systems to pilot the Apple project, which allows patients who visit participating providers to view data from their health records on the iPhone's Health app.

"I think the potential value of something like Apple health records is the development ecosystem around it—the apps that help to contextualize results and add value to patients," Longhurst said. "But that has not yet developed."

Trump administration officials say that requiring standard APIs in healthcare will ultimately encourage creation of new apps that provide patients with valuable services like price transparency and help providers report quality measures, among other uses.

"A core part of the rule is patients' control of their electronic health information, which will drive a growing patient-facing healthcare IT economy," ONC chief Dr. Donald Rucker said in a statement when the rules were released. His vision is for patients to one day manage and coordinate their healthcare "the same way they manage their finances, travel and every other component of their lives"—with apps.

But while enticing, that app economy isn't here yet.

Patients' limited use of APIs to date doesn't mean there isn't a market for health apps with more capabilities. Last year, the global market for mobile health apps hit $37 billion, according to market research firm Statista, and it's expected to continue to climb. Many of those apps aren't scientifically validated, and focus more on general fitness and wellness—but their popularity may speak to patients' interest in technologies that play a role beyond aggregating data.

But even if today's data-sharing apps don't catch on as the dominant way that patients access their medical data, it provides another avenue for those who do want to.

Despite low adoption, patients who have downloaded medical data via APIs have had positive things to say. More than three-quarters of UCSD Health patients who adopted Apple's health records feature in 2018 said they were satisfied with the capability, according to another study published in JAMA and co-authored by Longhurst.

And low adoption isn't limited to apps. In 2018, just 30% of patients who were offered access to an online medical record chose to view it, according to a data brief from the ONC. Most who chose not to access their records online said that they didn't think they had a reason to view it or preferred to speak with their provider about their care directly.

Dr. Joshua Briscoe, medical director of IT innovation at Orlando Health in Florida, said he's been looking into "innovative ways to share data with patients," in part because he's found not all patients respond to standard patient portals. That includes a plan to deploy a solution from Andor Health, which would give Medicare patients and their clinicians access to historical health information, aggregated from Blue Button 2.0. That's delivered via text messages that direct users to a secure website, rather than an app.

"Speaking from being a patient myself, and having family members who are patients, I find patient portals to be a bit challenging," Briscoe said. Moving forward, he said he's looking at how to deliver data to patients "considering where people spend most of their time—on mobile devices."