Austin, TX – 7 March 2013 - The Clinical Data Interchange Standards Consortium (CDISC) organized and hosted a meeting in Austin, TX to launch the Essential Standards to Enable Learning (ESTEL) initiative of the Learning Health Community (LHC). The CDISC-led ESTEL initiative is the first of several that have grown out of the May 2012 Learning Health System (LHS) Summit, sponsored by the Joseph H. Kanter Family Foundation (KFF), 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 Core Values and a common drive to work collaboratively to transform healthcare and health by realizing an LHS. A key goal of a Learning Health System (LHS) is to significantly shorten the time by which clinical research results inform clinical care decisions to improve the lives of patients.
The ESTEL initiative of the LHC was launched by CDISC specifically to concentrate on the identification of a minimal set of standards to enable an LHS. The meeting was attended by experts from the U.S. and Argentina, representing universities, clinical research organizations, technology companies, service providers, standards developing organizations and government (HHS/ONC). LHS use cases were developed to lead to the creation of a minimal set of standards and examples of how an LHS should work. “The participation in this LHS ESTEL Launch was impressive” stated Rebecca Kush, CDISC President and CEO. “Leaders in the Health IT and eHealth arenas came together to solve a very real problem for patients today, and they signed on to be responsible for action steps to move this initiative forward.”
CDISC will be hosting a webinar on 14 March 2013 to review the ESTEL meeting outcomes in detail. To attend, please register through this link: https://www1.gotomeeting.com/register/811535160
At the close of the ESTEL meeting, Joshua Rubin of KFF described himself as "awe struck" by the progress made. "The scale and scope of the transformation we are seeking to effectuate is beyond what any one organization or even stakeholder group can do alone. What we have done together then, is to transform our individual and collective efforts and passions into an emerging national, and one day global movement," Rubin stated.
CDISC is a 501(c)(3) global non-profit charitable organization, with over 300 supporting member organizations from across the clinical research and healthcare arenas. Through the efforts of volunteers around the globe, CDISC catalyzes productive collaboration to develop industry-wide data standards enabling the harmonization of clinical data and streamlining research processes from protocol through analysis and reporting, including the use of electronic health records to facilitate the collection of high quality research data. The CDISC standards and innovations can significantly decrease the time and cost of medical research and improve data quality, thus contributing to the faster development of safer and more effective medical products and a learning healthcare system. The CDISC Vision is to inform patient care and safety through higher quality medical research.