The US Health Data Ecosystem in 2020—Brave New World or Same Old, Same Old? | Electronic Health Records | JAMA Health Forum | JAMA Network
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The US Health Data Ecosystem in 2020—Brave New World or Same Old, Same Old?

  • 1Health Care Cost Institute, Washington, DC

The acclaim surrounding the new rules governing patient access to their health care data via application programming interface (API) technology highlights both the strides made in the US health care data ecosystem during the last 10 years and the challenges remaining. In 2010, health records existed largely in paper form in hospitals and physicians’ offices, there was no way for patients to access machine-readable versions of their health care data, and access to Medicare data was limited to a small group of academic researchers, with no access at all to comprehensive, usable Medicare Advantage or Medicaid data. Today, the records at most hospitals and physicians’ offices are digitized, Medicare beneficiaries can download and share their Medicare claims information via API, Medicare data has been expanded to multiple other users via the use of secure access technologies, and public use files as well as Medicare Advantage and Medicaid data are just now being made available.1,2

Despite this progress, additional steps need to be taken to ensure that we have a comprehensive way of measuring the successes or failures of our health care system. Despite the multibillion dollar government investment in electronic health records, the coronavirus disease 2019 (COVID-19) pandemic has demonstrated an urgent and potentially tragic inability to access real-time data or indeed any type of comprehensive data that could provide greater insight into the spread and progression of the virus. Information on testing is patchwork and inconsistent, as is clinical information on underlying health conditions among patients with COVID-19. A report from the US Centers for Disease Control and Prevention published on March 31, 2020, could only identify underlying health conditions for 7162 of 122 653 laboratory-confirmed cases (5.8%) of COVID-19. Even more worryingly, the report relied on data submitted via questionnaires. With a treasure trove of clinical information on all patients sitting in electronic health records nationwide, why are we not better positioned to execute standard queries across hundreds or thousands of hospitals and physicians’ offices that would help answer these questions?

Administrative claims data continue to sit in separate silos across payers, despite voluntary efforts like those at the Health Care Cost Institute and a small number of state-level all-payer claims databases. Legislation to establish a national all-payer claims database faltered in the Senate last year, leaving employers and other health system stakeholders unable to systematically understand and address the drivers of health care costs or, at an even more basic level, the cost of a given procedure. There is nearly 4.5-fold variation nationally in the median price for cesarean deliveries for individuals with employer-sponsored coverage ($4556 in Knoxville, Tennessee, vs $20 721 in San Francisco, California) and 2.5-fold variation within San Francisco itself ($15 165 vs $39 272).3 This is information that employers should have access to in determining benefits for their employees, but they do not. There is evidence that patients are much better off seeing a doctor who has done more rather than fewer of many procedures; however, as a nation, we lack access to even this simple information.

We’ve also seen a slew of new players eager to enter and disrupt the health care data ecosystem, a trend that is likely to accelerate with the implementation of the new rules and with more patients taking a hands-on role managing their health care data. Greater competition is important in facilitating functional and innovative markets, but we should remain vigilant in monitoring how these organizations approach privacy. In recent months, Google Health’s partnership with Ascension has come under media scrutiny that has exposed public concerns regarding the ways in which Google might use personal health information.4 What these stories reveal is interesting—despite all the legal i’s being dotted and t’s being crossed, there appears to be a fundamental distrust of big technology companies when it comes to privacy. That distrust is founded in and exacerbated by documented instances of many of these organizations displaying, at best, complacency toward respecting personal information.5 While patients have always had the right to access their data, these new rules, coupled with new technologies that will make it easier for patients to share their data, will require more conversations about privacy to ensure that companies that receive or access personal health information instill a culture of privacy from the very top to the very bottom of their organizations.

While the new patient data rules are a welcome development, it is important to recognize that they are focused on technologic enablement via APIs. These rules may finally spark a new wave of interoperable health data, but vigilance—and potentially additional regulatory action—will be needed to ensure this progress does not come at the expense of individual privacy. In addition, these rules cover a single part of a broader health data ecosystem. Further regulatory changes may also be needed to spur greater access to and use of both administrative and clinical data to help us manage and understand the health care system, both during the current pandemic and beyond.

Article Information

Corresponding Author: Niall Brennan, MPP, Health Care Cost Institute, 1100 G Street NW, Ste 600, Washington, DC 20005 (nbrennan@healthcostinstitute.org).

Conflict of Interest Disclosures: None reported.

References
1.
The Office of the National Coordinator for Health Information Technology. Quick stats. Updated June 17, 2019. Accessed March 12, 2020. https://dashboard.healthit.gov/quickstats/quickstats.php
2.
Ryan  F. What USDS is doing to support patient, provider access to Medicare claims data. Published March 6, 2020. Accessed March 12, 2020. https://www.governmentciomedia.com/what-usds-doing-support-patient-provider-access-medicare-claims-data
3.
Kennedy  K, Johnson  W, Rodriguez  S, Brennan  N. Past the price index: exploring actual prices paid for specific services by metro area. Published April 30, 2019. Accessed March 12, 2020. https://healthcostinstitute.org/hcci-research/hmi-2019-service-prices
4.
Copeland  R. Google’s ‘Project Nightingale’ gathers personal health data on millions of Americans. The Wall Street Journal. Updated November 11, 2019. Accessed March 12, 2020. https://www.wsj.com/articles/google-s-secret-project-nightingale-gathers-personal-health-data-on-millions-of-americans-11573496790
5.
Mathur  N. 2019 In focus: the year big tech tried to fight user privacy concerns but failed anyway. Accessed March 12, 2020. https://in.mashable.com/tech/9970/2019-in-focus-the-year-big-tech-tried-to-fight-user-privacy-concerns-but-failed-anyway
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