National Experience with Patient-Facing APIs: A First Look

Jump-Starting Patients’ Interoperability, Access, and Use of Health Data in the Digital Health Ecosystem

Multiple forces have pushed patient-facing APIs to center stage in 2019 as a national strategy and tool for access and interoperability with patients. The Centers for Medicare & Medicaid Services (CMS) and Office of the National Coordinator for Health Information Technology (ONC) began requiring Medicare and Medicaid clinicians and hospitals to use electronic health records with open application programming interfaces (APIs) certified to the 2015 Edition, in order to enable patients nationwide to view, download, and transmit their health data. Apple Health Records used patient-facing APIs to roll out availability of longitudinal health records to over 190 million patients across America. Now ONC and CMS have proposed groundbreaking new regulations to use standardized FHIR-based APIs as a cornerstone of national interoperability and patient access in the next year or two.

In a kickoff panel on November 18 at AMIA’s 2019 Annual Symposium in Washington, D.C., a cross-section of national leaders presented a first look at national experience with patient-facing APIs. As health care’s API era launches, the panel presented five key perspectives on patient-facing APIs—academic research, frontline health systems, app innovators and developers, and national policy—and strategies and priority use cases in the real world today. The multi-faceted presentations included the following:

• Findings of a forthcoming national study of leading health systems and their uses of patient-facing APIs, including best practices, early challenges, and potential policy implications

• Initial research on patients’ usage of those APIs

• A deeper look at one leading health system’s strategy and experience

• A leading app developer’s perspective

• ONC’s major policy proposal this year using APIs to advance patient access and interoperability

The panel generated a remarkable conversation among these different perspectives. Elise Anthony spoke to ONC’s work to put patient-facing APIs into real-world experience, to enable access and use of health data without special effort. Julia Adler-Milstein reported a steady increase in patients’ use of patient-facing APIs, even now in the beginning. The numbers are not large, but imagine where we may be ten years from now if we do this right—similar to EHR adoption from 2009-2019. Patients already access their health data far more than providers, Chris Longhurst noted. Anil Sethi spoke as a caregiver, an app developer, and an innovator, to the imperative to meet patients’ needs sooner, quicker, more simply using patient-facing APIs.

UC San Francisco’s study, in turn, found both diversity and commonality among the health systems’ experiences and strategies. For example, in late 2018, eight of the ten health systems already had patient-facing APIs in operation. Seven of the eight had at least some “write” capability, although implementation of “write” API functionality was variable. And only two of the eight health systems relied on their EHR vendors to manage the APIs; six of the eight health systems were using a middleware vendor for API management such as design, access control, and reporting.

The Need and the Opportunity

Numerous industries outside health care have already recognized that robust application programming interfaces are necessary infrastructure to connect data to knowledge to action in so many walks of life. Electronic health records began as, and often continue to be, health data repositories and billing systems for doctors and hospitals. However, their transformative value rests on the ability to share health data from these silos to the many, varied stakeholders in the learning health system that would benefit from more seamless health data access and use. Key among these stakeholders are patients.

In 2015, the ONC and CMS proposed to launch a potential democratization of electronic health information exchange by requiring the use of patient-facing APIs. CMS and ONC proposed that patients have access to their electronic health data stored in EHRs through open APIs that would allow patients to view, download, integrate, and share their health data wherever they chose: a family caregiver, an emergency department, a community clinic, a third-party digital health app. Originally, CMS and ONC required that these patient-facing APIs take effect on January 1, 2017, but delayed the requirement to January 1, 2019.

A First Look

After much anticipation, patient-facing APIs are now live in many places in the United States. However, little information has been published about their real-world usage and impacts. Making the technology available does not necessarily ensure the concomitant culture, business drivers, and workflows needed to use it well.

The panel, comprised of national leaders in their respective perspectives, provided a first look at early real-world experiences with patient-facing APIs from four diverse perspectives—academic research, health systems, national policy, and consumer-facing applications—to provide an important initial snapshot of the promise and real world experience to date:

• Research on National Landscape and Early Experiences: Dr. Aaron Neinstein, of UC San Francisco’s Center for Digital Health Innovation, presented the research findings on how ten leading national health systems are implementing patient-facing APIs and the lessons they have learned, including strategies, use cases, infrastructure, governance, policies, available applications, and workflow. The findings, based on interviews in September-December, 2018, reveal variability among these leading health systems with respect to their emphasis on and use of patient-facing APIs. The Commonwealth Fund funded the study.

• Patient-Facing API Usage Data: Dr. Julia Adler-Milstein, Director of UC San Francisco’s Center for Clinical Informatics & Improvement Research, presented new empirical findings from 15 health systems on how often patients use their smartphones to connect and download their EHR data from April-December 2018.

• Specific National Health System Perspective: Dr. William Morris, Associate Chief Information Officer of Cleveland Clinic, was scheduled to discuss in greater detail the experience of a leading national health system (Cleveland Clinic) and its perspective on strategy, use cases, implementation, challenges, and best practices. Despite herculean efforts, he was unable to overcome fickle airline travel, and Dr. Christopher Longhurst, Chief Information Officer of UC San Diego Health, provided a perspective.

• App Innovator and Developer Perspective: Anil Sethi, Founder and Chief Executive Officer of Ciitizen, discussed the experience of a major app innovator and developer (Ciitizen), its perspective on the state of patient-facing APIs, and how patient-facing APIs might meet its strategy and use cases to provide access and interoperability to patients.

• Federal Policy Perspective: Elise Anthony, Executive Director of ONC’s Office of Policy, described ONC’s proposed regulations on APIs and information blocking as a major nationwide development to advance patient-facing APIs, patient access, and interoperability.

Together, the panel brought to AMIA’s national audience an important first look as patient-facing APIs burst upon the national digital health ecosystem.

As we wrote in our blog “Electronic Health Record? Comprehensive Health Record? Connected Health Record!” in 2018, interoperability is a national priority precisely because no single vendor EHR system is or can be comprehensive—there must be interoperability across the myriad data types, data sources, authorized users, and use cases in patients’ lives. Health and health care are neither static nor siloed, but are constantly in motion, and patients’ health data must be in motion, too. Patient-facing APIs make a connected health record possible for America’s patients. The panel shared significant learnings to date to help make it so.

By Mark Savage, Director of Health Policy, UCSF CDHI