“Data is the new oil. It’s valuable, but if unrefined it cannot really be used.” - Clive Humby...
Catalyzing Interoperability: Building the Health Data Lingua Franca and Following the Federal Government’s Lead
The Convergence of FHIR & Blue Button
In 2011 when Australian HL7 thought-leader Grahame Grieve proposed the “Resources for Health” — the precursor to Fast Interoperability Health Resources (FHIR) — it was because the movement to build a standard language of healthcare data exchange had largely failed. The vision of exchanging, integrating, and sharing digital health information that inspired the creation of Health Level 7 International in 1987 confronted the twin challenges of its own quest for comprehensiveness and the emergence of the internet and its language as the lingua franca of all digital exchange.
However, with Grieve’s approach that emphasized developer-community defined usability over comprehensiveness and resources built on open Internet standards for data representation, the creation and promulgation of FHIR created a standard, shared language that is the catalyst for an emergent revolution in healthcare.
Another catalyst of the emergent revolution was the federal government’s movement to give information to those to whom it provided health insurance. For example, in 2011, veterans who got their health insurance through the Veterans Administration (VA) and Medicare Beneficiaries who were insured by the Centers for Medicare & Medicaid Services (CMS) were able to go to a website and download a text or PDF version of their health record. Called the “Blue Button” (for the icon that a veteran or Medicare Beneficiary could click on the website), the idea facilitated by public service leaders was a radical possibility at the time and provided access to health information that most health consumers don’t have even today.
In 2015, the twin catalysts of FHIR and government-led patient access merged when the Department of Health and Human Services (HHS) and CMS began the push to transform Blue Button into a data service using a standard language of health data exchange. The result is the Blue Button 2.0 API. Blue Button 2.0 would not only allow the digital exchange of Medicare beneficiary health data it would also give ownership of that data (through the OAuth 2.0 standard) allowing beneficiaries to share their data digitally.
As with Grahme Grieve’s vision for FHIR, what has become a Blue Button “movement” has emphasized developer-community definitions of usability and that community has now grown to over 1,500 developers from across the healthcare ecosystem. Importantly, the FHIR-based Blue Button movement has spilled out from its original federal government VA and CMS use cases and is providing a working model for private sector health insurers looking to give their customers what veterans and Medicare Beneficiaries have now.
While these are exciting developments, patients today don’t have full control of their own healthcare information. Health consumers simply don’t control their essential records, test results and basic information about those who provide them care.
This has to change. And this is the patient- and developer-led revolution that is underway.
Also leading the way in defining the emerging landscape of health data interoperability is CMS and the Office of the National Coordinator for Health IT (ONC). Here are a few critical intersections where activist health technologists will find engagement and emerging markets:
- CMS is calling on all private health plans to provide patients their data. The country’s health agency is beginning to require all Medicare Advantage plans and qualified health plans (QHPs) offered through the federally facilitated exchanges to release their data, and calling on all health insurers to do the same. CMS argues that the private plans that contract through Medicare Advantage and the exchanges should provide the same benefit that is being provided through Medicare’s Blue Button 2.0.
- The federal government has begun streamlining the Medicare and Medicaid EHR Incentive Programs for eligible hospitals and critical access hospitals (commonly referred to as the Meaningful Use programs) and the Quality Payment Program (QPP) for clinicians (part of Medicare Access and CHIP Reauthorization Act of 2015 (MACRA)) to increase the programs’ focus on interoperability and to reduce the time and cost required to comply with them.
- CMS intends to prioritize the use of healthcare “quality measures” and improvement activities in value-based care and quality programs that lead to interoperability.
- CMS is also taking steps against information blocking (a practice in which providers prevent patients from getting their data), as required by law by requiring hospitals and clinicians under some CMS programs to show they have not engaged in data blocking activities.
- As part of the effort to ensure that data follows the patient, CMS finalized for some of its programs the requirement for health care providers to use 2015 Edition certified EHR technology (CEHRT) beginning in 2019, which is capable of giving data to patients in a usable and secure electronic format. The updated 2015 Edition CEHRT includes technical requirements focused on interoperability and the ability of patients and their care teams to share healthcare data more effectively through APIs — application programming interfaces. APIs are software that allow other software to connect to one another and are the primary way that data are shared electronically. CMS continues to collaborate with the ONC to improve the clinician experience with EHRs.
- In an effort to ensure that healthcare data follows the patient, CMS intends to specify what types of information — ideally in electronic format — must be shared by hospitals with a patient’s receiving facility or post-acute care provider.
We often think the present moment is one of digital natives and technological sophistication. In healthcare that is not the case. However, change is happening. Change is coming. The disruptive possibilities of FHIR and consumer-mediated exchange are as important as the policy debates about Medicare-for-All and the future of the Affordable Care Act. We are at the beginning of this revolution.