Health data interoperability: Libre software could salve what proprietary vendors break

Oral testimony in hearing to examine implementing the 21st Century Cures Act

The Office of the National Coordinator for Health IT (ONC) has an information blocking proposal in public comment [link]. This information blocking proposal addresses, among other topics, the abuse of the Health Insurance Portability and Accountability Act (HIPAA) by health IT vendors to block access to patient data, and in-turn extract economic rents from payors, providers and patients.

In observing the fracas of mobilization of concentrated interest against a very large, but relatively diffuse public benefit, I turn my attention to one man’s testimony at a hearing to examine implementing the 21st Century Cures Act.

Vendors develop products and services that do not interoperate. In order to support some level of communication across systems, the market has created even more products and services — like integration and interface engines — that help to glue together these proprietary technologies. But it is up to the providers to bear the burden and cost of implementing and integrating all of these separate pieces, and it doesn’t stop once we have bought them.

Christopher Rehm, CMO, LifePoint Health, written testimony to Senate HELP committee on 26 March 2019.

The bad news is that Chris is right. Interoperability, and ultimately substantive data ownership by patients, must seem implausible under the current paradigm of proprietary vendors doing everything in their power to vendor-lock providers (and payers) into proprietary software, backed by proprietary data models, in vertically “integrated” proprietary walled gardens.

YMMV, but I read Chris’ testimony as a call to arms to alter the business model landscape of health IT vendors.

The government could follow Chris’ advise and apply extension, after extension, after extension, to allow proprietary vendors to further entrench their proprietary vertical “integration.” The result will be similar to the AWS, Azure, GCP triumvirate found among cloud-service providers: Epic, Cerner and Athena|AllScripts|eClinicalWorks. Innovative 3rd party would have to “pay to play” with these behemoths, facing acquisition or well-resourced copy-catting well before becoming a threat to the rent-seeking profits of the triumvirate.

The good news is that it doesn’t need to be this way. Libre (free) software has demonstrated, that in putting principles first, most other issues are readily resolvable.

Briefly, the four pillars of the libre software movement are the freedom to run, study, redistribute and modify software. With these freedoms enshrined, end-users and communities are empowered to ensure that software works for them. That source code is freely available — open-source — is a precondition of these freedoms.

What the government could do, is disallow reimbursements to payers and providers that do not respect the freedom of their patients, physicians and other users. Health IT vendors would, after a losing tooth-and-nail fight against the freedom of their end-users, adapt their business models to support GPL-licensed software and data interoperability as industry standard.

Rather than competing on “my proprietary walled garden is better than yours”, vendors could compete on integration, ease of interoperability and above all, service.

Libre software could be the future of health IT. A world in which, to echo Chris:

It is not about the (proprietary) technology; it is about patients, their care, and their outcomes.

— Ryan’s thoughts/comments are his own. He writes software for an open-source health data interoperability vendor.

Software for life-sciences and health IT. Basic Income. Solidarity Investment.

Software for life-sciences and health IT. Basic Income. Solidarity Investment.