The Promise and Possibility in Health Data During COVID and Beyond

Feb. 26, 2021
While destructive, the storms of 2020 cleared a path for a stronger HIE sector that is more capable of rapid innovation in 2021 and beyond

The year 2020 was a weird, wild, and, in some small ways, still quite a wonderful year that forced us to rethink the structure of industries and consider new ways of operating and communicating. A clear lesson from 2020 was that no one can predict the future, but it’s worth giving it a try anyway as we get rolling in 2021. There are major milestones for health data innovation in the year ahead and many signs that this will be a significant year for interoperability progress. Innovative health information exchange (HIE) leaders will continue to find their voice and their value in the market. Here are the three key themes that we think will drive the interoperability/HIE landscape in the year ahead:

  1. Federal policy will drive interoperability.

While the health IT policy landscape might most often be thought of as pre-HITECH and post-HITECH, the Interoperability and Patient Access rules finalized by CMS and ONC in 2020 will leave as great a mark on the industry—if not greater—than HITECH. Already since the rules have been finalized, we have seen some of the greatest offenders of so-called “information blocking” start to revise their practices toward greater openness. Many of the large EHR vendors rolled out free or nearly free tiers of API connectivity. Patient-access requirements of large categories of providers and health plans are starting to reframe the kinds of data exchange that are possible and are inviting large, consumer-focused technology companies (back, in some cases) into the market. 

The Biden administration may revisit timelines for enforcement discretion of the new regulations finalized in 2020. Given the all-consuming nature of the COVID response for healthcare organizations, there’s a credible argument for further flexibility. That said, the progress already seen is heartening. 

Specifically, rather than delaying all of the new CMS conditions of participation for Medicaid agencies and health plans another whole year until July 1, 2022, the patient access and provider directory API requirements should be decoupled, with the patient access deadline alone being delayed. This would give organizations more time to manage the complexity and risk associated with patient access while also affording them the chance to make thoughtful plans for their provider directories and ensure solutions are well conceived. This makes particular sense for Medicaid MCOs and CHIP plans, which are subject to additional provider directory requirements that were just imposed by the 2020 Medicaid Managed Care Final Rule, published in mid-November.

  1. Patient consent and control of sensitive data take center stage.

When first instituted in the 1970s, 42 CFR Part 2, the federal law that protects substance use treatment data, was intended to protect patients from stigma — that is, from having their status as someone seeking recovery used against them. While the intent is worthy and the regulations have been updated from time to time, they have failed to keep up with the times. In particular, with most care shifted to virtual settings and the opioid epidemic raging anew, privacy laws have become an impediment to vital treatment and care coordination. 

For several years, it seemed that Part 2 was on an inevitable march toward rationalization and alignment with HIPAA. It now seems to be happening even more quickly than expected, with statutory language to this effect being included in the CARES Act this past spring. On the whole, this should be a good thing, and progressive healthcare organizations are starting to take advantage of the changing regulatory posture. It’s also possible to have too much of a good thing, as separate patient access requirements in the Interoperability Rule are set to throw open the doors to sharing patient data with all manner of third parties outside of HIPAA. Policymakers must strike the right balance, and both smart technologies and community-based organizations like HIEs will have important roles to play.

Patient consent is best managed as close to the community level as possible. At the Idaho Health Data Exchange (IHDE), Idaho’s statewide HIE, we recently announced plans to expand our network and services to behavioral health providers with a flexible Consentric patient consent management solution. The platform facilitates sharing of mental health and substance use disorder (SUD) information, and improves coordination across the continuum of care. It is built to be embedded in a range of patient-led and provider-mediated workflows.

  1. Stimulus funded public health solutions will emerge.

With widespread distribution of COVID vaccines will come a fresh chance to get it right with public health infrastructure — tracking the supply chain, identifying and communicating with eligible patient populations, recording first and second doses, and monitoring efficacy. Hopefully, that includes a critical look at the ways our infrastructure broke down in the face of a worldwide pandemic in 2020. No doubt there are many lessons to learn from such a post-mortem. It is certain that a lack of investment in state and local public health authorities, and in disease surveillance functions in particular, was a contributing factor to the ineffectiveness of the government response, particularly in the early months of the pandemic. The federal government will likely make rebuilding this infrastructure a critical funding priority in 2021. 

The outlook for more stimulative federal spending through 2021 and beyond remains uncertain. Nonetheless, HITECH-style federal commitments to the healthcare industry to prevent the mistakes of the COVID response from happening again are expected. As has been done in structuring investments in states’ Medicaid technology enterprises, federal policymakers should impose a rigorous framework of standards on states that take the money. 

While destructive, the storms of 2020 cleared a path for a stronger HIE sector that is more capable of rapid innovation in 2021 and beyond. In addition to new funding headwinds, traditional players in the vendor marketplace have been underinvesting in HIEs for years or even walking away, bringing stronger HIEs to develop their own technology stacks, and even making them open source; sharing these stacks to improve efficiencies and benefit from economies of scale makes perfect sense. No doubt, 2021 will bring major milestones, new structures and fresh ways of thinking about healthcare delivery.

Hans Kastensmith is the executive director at Idaho’s Health Data Exchange (IHDE). As a five-time CEO with over 30 years of experience in healthcare, Kastensmith has been involved in significant healthcare reform initiatives for the government and private sectors. David Finney is the co-founder and partner at Leap Orbit, an innovation partner to some of the biggest health data networks in the U.S., including CRISP, IHDE, Manifest MedEx and NEHII, as well as the policymakers who oversee them.

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