Data access and connectivity are ethical requirements for the healthcare industry: commentary on ONC’s 2018 Report to Congress

Since the passage of HITECH in 2009, the Office of the National Coordinator (or ONC, which is part of the Department of Health & Human Services) has been tasked with driving adoption of a nationwide health IT infrastructure. This effort is core to the vision of HITECH: a common system for the secure and seamless flow of health data between patients, providers, payers, and research institutions. Such a system could improve the quality and provision of medical care at the level of both an individual patient and the greater population.

ONC’s recently released progress report identifies some of the challenges to achieving this vision, but also reiterates the agency’s commitment to that vision and the value of success.

Since ONC’s first report to Congress in 2012, it has dutifully documented its efforts and the progress the healthcare industry has made in access, usability, and interoperability of information and information technology. This year’s report, which covers the period between November 2016 and August 2018, emphasizes widespread (albeit regionally unequal) adoption of health information technology among healthcare entities; however, it concludes that the greater “digital footprint” has not yet brought with it the innovation in data accessibility and usability that HITECH intended.

For any patient who has tried to access medical records or any researcher who has tried to obtain public health data, this is not unexpected news. ONC reports that there are three barriers to progress on the data accessibility front:

• Technical barriers, which include the inability to match data across records and the absence of standardized data formats and taxonomies.
• Financial barriers, such as the high cost of developing, implementing, and learning new health technology, particularly as changing requirements lead to ongoing maintenance and upgrades.
• Trust barriers, which stem from the legal and business incentives that cause healthcare entities to restrict the flow of information for competitive advantage, or as a result of misguided interpretations of compliance requirements.

All of these barriers keep data inaccessible even in its electronic format, and the cost of this inaccessibility is harmful to both patients and our public health systems. Connecting and accessing health data is essential if the healthcare system as a whole is going to deliver high quality and seamless care for patients. For this reason, the ONC has focused its efforts and resources over the last two years on addressing these barriers through public-private forums; guidance on design architecture and data standards; new rulemaking; project funding; pilot programs, developer challenges, and inter-agency initiatives.

However, the economic and social benefits of accessible data and interoperable health IT programs are not the only reason to support the ONC’s work. Access and connectivity are not just technical challenges or a thorny collective action problem. They are fundamental ethical requirements for the healthcare industry:

• A patient should not have to suffer because his or her primary care physician cannot access data from a specialist’s electronic health record (EHR) system.
• A clinical trial for an innovative therapy that could help chronically ill patients should not be delayed because the contract research organization (CRO) cannot find valuable demographic data to inform site selection and patient recruitment.
• An insurer should not be foreclosed from applying the findings of their behavioral health research to reduce insurance costs for their consenting customers.

I believe data ethics in healthcare is not simply about protecting patient privacy; it’s also about respect for access, choice, and portability. After all, what value does improved health IT offer if not to ensure that both the patient and the provider can securely access medical data when they need it?

ONC’s work is critical for the healthcare industry. Their 2018 report suggests they are not giving up on the vision of a health information exchange infrastructure. I look forward to following ONC’s efforts in the next year and to working in parallel to support the same vision.

Disclosure: I am the Head of Privacy & Data Ethics at Datavant, a company focused on securely connecting health data to improve patient outcomes.