Building and Strengthening Infrastructure for Data Exchange: Lessons from the Beacon Communities

Abstract

Introduction:The Beacon Community Cooperative Agreement Program supports interventions, including care-delivery innovations, provider performance measurement and feedback initiatives, and tools for providers and consumers to enhance care. Using a learning health system framework, we examine the Beacon Communities’ processes in building and strengthening health IT (HIT) infrastructures, specifically successes and challenges in sharing patient information to improve clinical care.Background:In 2010, the Office of the National Coordinator for Health Information Technology (ONC) launched the three-year program, which provided $250 million to 17 Beacon Communities to invest in HIT and health information exchange (HIE) infrastructure. Beacon Communities used this funding to develop and disseminate HIT-enabled quality improvement practices found effective in particular community and practice environments.Methods:NORC conducted 7 site visits, November 2012–March 2013, selecting Communities to represent diverse program features. From August–October 2013, NORC held discussions with the remaining 10 Communities. Following each visit or discussion, NORC summarized the information gathered, including transcripts, team observations, and other documents the Community provided, to facilitate a within-Community analysis of context and stakeholders, intervention strategies, enabling factors, and challenges.Results:Although each Community designed and implemented data-sharing strategies in a unique environment, similar challenges and enabling factors emerged across the Beacons. From a learning health system perspective, their strategies to build and strengthen data-sharing infrastructures address the following crosscutting priorities: promoting technical advances and innovations by helping providers adapt EHRs for data exchange and performance measurement with customizable IT and offering technical support to smaller, independent providers; engaging key stakeholders; and fostering transparent governance and stewardship of the infrastructure with neutral conveners.Conclusion:While all the Communities developed or strengthened data-exchange infrastructure, each did this in a unique environment of existing health care market and legal factors. The Communities, however, encountered similar challenges and enabling factors. Organizations undertaking collaborative data sharing, performance measurement and clinical transformation can learn from the Beacon Communities’ experience.

Transforming Health Data to Actionable Information: Recent Progress and Future Opportunities in Health Information Exchange

“…This can be challenging from a technical perspective and may result in limited benefit to stakeholders [169,175,176]. The need for trustworthy and secure technology and standards for HIE are well documented and provide a foundation for enabling robust sharing of health information [175,[177][178][179][180][181]. Policies should support the expansion of organizations that enable HIE to be considered a component of public infrastructure, much like electricity or water delivery, to support healthcare delivery.…”

Community-based Health Data Cooperatives Towards Improving the Immigrant Community Health: A Scoping Review to Inform Policy and Practice

“…Negative aspects of data control and ownership were focused on the political and bureaucratic hurdles to truly make Webpages after duplicates removed (n = 614) data belong to participants. This includes: first, establishing legal precedence, where health information as a private property of patients is hard to justify based on traditional labour theory of ownership [25][26][27][28] . Second, the HDC model would need to establish connections within government agencies, which may risk the privacy of participants if robust data governance is not in place [19,23].…”

IT-enabled Community Health Interventions: Challenges, Opportunities, and Future Directions

“…Two of the papers review existing community-wide HIT projects that span multiple states. 5 , 6 Stakeholder Engagement: Three of the papers delineate stake-holder engagement. 7 , 8 , 9 These papers often address governance challenges and offer solutions to engage stakeholders.…”