By Daniel Stein

Every day, the Covid-19 pandemic reinforces the need for responsible data-sharing across programs, systems and sectors at every level. At the same time, one potential upside of the crisis (if there can be such a thing) is that we may now have a unique opportunity to make real progress on filling that need.

As part of NIC’s commitment to improving health and well-being through better information-sharing, interoperability and collaboration – pointedly including by learning the lessons of the pandemic – we have embarked on a yearlong Action Agenda to instigate and implement real progress. And an important part of that agenda is our weekly webinar/discussion series, which focused last Friday on “Responsible Data Sharing During (and After) a Pandemic.”

The webinar’s primary presenters were BrightHive CEO Matthew Gee and the company’s Co-Founder and Head of Strategic Initiatives, Natalie Evans Harris. They led about 230 participants through a thoughtful conversation on what responsible data sharing meant before COVID-19 and what it means now. They also brought along guest speakers: Peter Sloan, Director of Research and Evaluation at Trying Together; Michael Vente, Senior Director of Research and Data Governance at the Colorado Department of Higher Education; and Sara Jordan, Policy Council at the Future of Privacy Foundation – all of whom shared what the data-sharing experiences of their organizations and networks during the pandemic.

The discussion broke down into four sections, which were 1) best practices in normal times; 2) starting from scratch in a crisis; 3) pivoting to meet urgent challenges; and 4) challenges unique to the pandemic. While BrightHive’s presenters covered these topic areas throughout the discussion, they also tailored the conversation by engaging participants in a discussion of how they are leading or participating in data sharing as it relates to Covid-19.

Among the encouraging, forward-thinking initiatives participants described were:

  • Coordinating virus testing and reporting the results using Health Information Exchanges (HIEs).
  • Sharing data between departments of Education and Human services to increase EBT payments intended to replace school lunch programs.
  • Linking Homeless Management Information Systems with HIEs to improve transitions in care for Covid-19 positive homeless patients to shelter locations where they can socially distance.
  • Sharing data between CBO, early childhood providers and medical providers around the Social Determinants of Health and Well-Being.
  • Co-leading a coalition to expand Telehealth.
  • Strategizing how to conduct employee contact tracing and how it impacts workforce management.
  • Encouraging responsible data sharing between child welfare, substance use treatment and courts both at the case level (caseworkers/attorneys/service providers) and the systems level (policies that encourage data sharing among organizations for collaborative outcomes).

These promising efforts show how data-sharing professionals are seizing the moment, given the current situation, and are moving the needle forward. That said, as this pandemic eventually eases or ends, how do we keep the momentum going? That was a looming question during last week’s webinar, particularly as it relates to convincing skeptics of data-sharing because of privacy concerns.

Sara Jordan pinpointed this concern, saying that “privacy is a religion,” and the way many people think about it is tied to their core beliefs. So not everyone is going to be convinced that the data we’re asking them to share is going to actually remain private, but we can be governed by principles and policies that help people feel more comfortable about moving forward while addressing their very real concerns. And, necessarily, we should do so while continuing to be as transparent as possible.

We hope and believe our weekly webinars/discussions contribute to those objectives. Moreover, through our broader Action Agenda, we think it’s critical to keep driving progress – even during the pandemic – so that we’re ready to truly tackle challenges like racial disparities, socioeconomic mobility and health inequity when we get to the other side.

Please Stay tuned to our work and join NIC to participate in it if you can. In particular, be on the lookout later this year for a new course in our InterOptimability Training and Certification Curriculum that we’re constructing with BrightHive!

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About the author:

Brian Handspicker, a key participant in Project Unify, is the Technical Lead for the National Information Exchange Model (NIEM) Health Community of Interest. He is a subject matter expert on mapping and modeling of information between clinical healthcare standards and non-clinical domains.

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