Community Initiatives

Consistent with the emergent characteristics of the LHS itself and the grassroots approach of the Community, major steps toward realizing the LHS vision are accomplished through self-organizing, multi-stakeholder, collaborative initiatives.

• Each initiative is hosted by a trusted neutral convener.

• To date, the Community has catalyzed an initiative to identify Essential Standards to Enable Learning (ESTEL).

• Other initiatives to begin soon include LHS governance and the creation of a technology “sandbox” for federated data sharing.

• For ESTEL, participants have travelled across the country (and in a few cases, around the world) at their own expense to actively participate; others have engaged via webinars, conference calls, and email.

• All initiatives will be designed to ensure that grassroots collaborative efforts result in sustained action and engagement as well as continued and meaningful impact.

• Consistent with the emergent characteristics of the LHS itself and the grassroots approach of the Community, major steps toward realizing the LHS vision are accomplished through self-organizing, multi-stakeholder, collaborative initiatives.

ESTEL Links:

• CDISC Launches Learning Health Community Standards Initiative

• Learning Health System – Essential Standards to Enable Learning (ESTEL) Webinar

• Learning Health Community – ESTEL Meeting hosted by Duke

• Duke Center for Health Informatics: DCHI Hosts Learning Health Community (LHC) Meeting, Plus the Meeting Minutes (16-17 Sep 2013)

• Institute of Medicine (IOM) Presentation (3 Dec 2013)

• ESTEL Presentation at the ESTEL Meeting at the Agency for Healthcare Research and Quality (AHRQ) (17-18 Apr 2014)

• Institute of Medicine (IOM) Presentation (30 May 2014)

• CDISC Public Webinar Series: The Learning Health Community: ESTEL Initiative Update

• CDISC Webinar: Learning Health Community - ESTEL Update Initiative (Slides, Audio Recording) (5 Nov 2014)

• CDISC Webinar on the ESTEL Framework (7 Mar 2015)

• Presentation in Brussels, Belgium: Learning Health System in Europe (24 Sep 2015)

• Description of the imCORE (immunotherapy Centers of Research Excellence) Network (Nov 2016)

• Presentation in Taipei, Taiwan: International Symposium on Learning Health System for Continuous Improvement, Taipei Medical University (Dec 2016)

• Presentation Summarizing ESTEL Efforts and Impacts to Date (4 May 2018)

• Publication Titled “Use of EHRs data for clinical research: Historical progress and current applications” (16 Jan 2019)

• Publication Titled “The Long Road to eSource” (May 2020)

• Publication Titled “FAIR data sharing: The roles of common data elements and harmonization” (12 May 2020)

LHS Governance Initiative Links:

• Resources Building Upon the October 27, 2014 Kickoff Meeting of the LHS Governance Initiative at NCHICA

  • Press Release: Learning Health Community Launches Multi-Stakeholder Initiative to Develop LHS Policy and Governance Framework

  • Developing a Policy & Governance Framework for an Operating Learning Health System: Presentation to the HIMSS Center for Patient and Family-centered Care (12 Nov 2014)

  • Draft Charter: Task Force for the Development of a Governance / Policy Framework for a Functional Learning Health System (LHS)

  • Terms and Terminology

  • Background Readings

  • Draft Key Points (27 Oct 2014)

  • Draft Meeting Notes (27 Oct 2014)

  • Draft LHS Operational Timeline (27 Oct 2014)

• The Governance and Policy Framework Initiative of the Learning Health Community: Comments on the Rules of Engagement and Governance: A Critical Part of the Shared Nationwide Interoperability Roadmap (3 Apr 2015)

  • The Governance and Policy Framework Initiative of the Learning Health Community Comments on the Office of the National Coordinator for Health IT's "Connecting Health and Care for the Nation: A Shared Interoperability Roadmap -- Draft Version 1.0" (3 Apr 2015)

  • Supplement: Table 1. Extensions to the ONC Roadmap Stakeholder Perspectives (3 Apr 2015)

  • The Office of the National Coordinator for Health IT's "Connecting Health and Care for the Nation: A Shared Interoperability Roadmap -- Draft Version 1.0" (Highlighting the Preamble to the LHS Core Values on Page 18)

  • Presentations at the NCHICA Informatics & Analytics Roundtable meeting (7 Apr 2015)

  • Presentation at HIMSS15 by Catherine Costa, Rebecca Kush, Holt Anderson, and Ricky Bloomfield and related press coverage in the HIMSS blog (Joshua Rubin interview), Healthcare IT News, and FierceHealthIT (13 Apr 2015)