On 16-17 September 2013, the Duke Center for Health Informatics (DCHI) hosted a two-day meeting for high-level strategy discussions pertaining to the Essential Standards to Enable Learning (ESTEL) initiative of the Learning Health Community. This was the third face-to-face meeting focused on the ESTEL initiative, led by the Clinical Data Interchange Standards Consortium (CDISC). Participants from universities, clinical research organizations, biopharmaceutical companies, technology companies, service providers, standards-developing organizations and related healthcare entities travelled from as far away as the United Kingdom and California and also included a number of prominent organizations from Duke's backyard such as North Carolina Health Information and Communications Alliance, Inc. (NCHICA), SAS, GlaxoSmithKline and Quintiles. The multi-stakeholder participants, who share a dedication to collaboratively realizing a national-scale Learning Health System (LHS), worked together over the two days to build consensus on a framework for identifying and developing an essential set of standards to empower stakeholders across the healthcare and health IT spectra to realize the LHS vision. Collaborative work included reviewing current learning projects and identifying standards-related lessons learnable from them; identifying potential barriers to success and corresponding ways to surmount them; further developing a scope for the ESTEL initiative; and strategizing around next steps culminating in concrete actions promising to make meaningful impacts.
This September meeting at Duke builds upon other collaborative ESTEL work this year, including a February two-day ESTEL kickoff meeting convened by CDISC in Austin, Texas, a March CDISC-hosted ESTEL webinar and a July ESTEL Executive Committee meeting hosted by the Institute of Medicine of the National Academy of Sciences in Washington, DC. The ESTEL initiative itself was catalyzed by the May, 2012 LHS Summit, sponsored by the Joseph H. Kanter Family Foundation, which convened a critical mass of key stakeholders representing over 80 organizations across the healthcare spectrum and achieved multi-stakeholder consensus on a set of ten LHS Core Values that will underpin a national-scale LHS. Such consensus has given rise to the self-organizing (and ever-growing) Learning Health Community bonded together by a shared belief in the LHS Core Values and a common drive to work collaboratively to transform healthcare and health by realizing an LHS.
At the September ESTEL meeting, drawing heavily on parallels to the Internet, participants achieved consensus on an "hourglass model", with the minimal essential set of standards fitting at the neck of the hourglass, enabling continuous innovation (and both competition and collaboration) around developing a range of learning-related tools and services (bottom of the hourglass), as well as within the system itself (top of the hourglass). Participants began work to develop a multi-stakeholder consensus statement related to this "just enough" model of standardization, including areas ripe for development of or agreement upon such essential standards.
A follow up teleconference will be held 21 October to continue the consensus process and to include interested parties who could not attend the face-to-face meeting. Additional next steps include developing a consensus statement specific to ESTEL and communications to bring additional stakeholders into the LHC and the ESTEL initiative. Future ESTEL efforts will begin the process of identifying the minimum standards and developing multi-stakeholder support for them.