SYMPOSIUM: THE LEARNING HEALTH CARE SYSTEM: USING BIG DATA TO IMPROVE SYSTEMS & ADVANCE CARE IN COMMUNITIES
SMDM members have long sought to both use healthcare systems for research (epidemiology, pragmatic clinical trials), planning and resource allocation and sought to involve both practitioners and patients in the use of evidence (decision support and shared decision making). As David Eddy discussed in his 2013 SMDM Address, the growing use of electronic medical record systems worldwide provides an unrivalled opportunity to accelerate both knowledge production and re-use. However, significant challenges exist in both research and clinical data representation, analysis and integration of heterogeneous research and healthcare systems. In addition, the healthcare marketplace itself must support a different set of tools than are currently considered part of the electronic health record. The seminar will consider approaches to generating community and marketplace support, data representation and standards, and decision support in the USA and Europe.
The SMDM 2014 theme is ‘Medical Decision Making Among Diverse Populations’, by ensuring that research and knowledge translation take place within the context of care delivery and in healthcare settings, the LHCS can play a significant part in ensuring that diverse population groups are enabled to take part in research and to benefit more directly from research innovations.
Format: Five minute introduction by the chairs with four fifteen minute talks followed each by five minutes of questions and fifteen minutes for discussion.
Content:
- The learning healthcare system in the USA. Prof Friedman.
Will describe The Learning Healthcare movement in the USA, including the concept and the key emphasis on building the LHS as shared infrastructure engaging all health stakeholders. He will review the many papers and reports that have called for the LHS, the data networks and other elements that are emerging in response, and a grassroots movement to realize an LHS at national scale. He will also outline a new research agenda seen as essential to realize a high-functioning LHS.
- Electronic health records and shared semantics. Prof Delaney.
Will describe work being done as part of the EU-funded TRANSFoRm project to establish standards for the integration of SYTEMS for clinical care and research. These include clinical trial and cohort studies using research data collection at source within health record systems and challenges in the representation of information for clinical and research purposes.
- Decision support in the LHCS. Prof Downs
Will describe his group’s experience with point of care decision support systems and the use of expected value as a mechanism for prioritizing questions, alerts, and reminders. The work includes mechanisms for capturing large volumes of data directly from patients and combining data from patients and electronic record systems using Bayesian network methods. Finally, he will discuss web services as a model for expanding these approaches globally.
- Bringing institutions together in support of a LHCS. Prof Hess
Will describe the challenges and solutions to bringing together multiple institutions to create a network in support of a LHCS. These include cultural differences, institutional priorities, regulatory environment, data provenance, and stakeholder engagement. Will use PaTH, one of the 11 PCORnet Clinical Data Research Networks, as a case study.
Speakers:
Charles Friedman, Professor of Information and Public Health, University of Michigan, USA
Dr Friedman directs the health informatics program at the University of Michigan. He is also leading many activities related to the LHS including: a comprehensive research program across 11 schools at the University, a state-wide LHS initiative, and a grassroots national movement. Prior to moving to Michigan, he was Chief Scientific Officer at the Office of the National Health IT Coordinator, where he was a lead promoter of the LHS.
Brendan Delaney, Wolfson Chair of General Practice, King's College London, UK
Dr Delaney is scientific director for the TRANSFoRm Project, and has a longstanding interest in research methods in the clinical setting, particularly cost-effectiveness RCTs and evidence for diagnosis in the primary care setting. He has been an SMDM member for 15 years.
Stephen M. Downs, Jean and Jerry Bepko Professor of Pediatrics, Indiana University USA.
Dr. Downs, Jean and Jerry Bepko Professor of Pediatrics, is Director of General and Community Pediatrics and Children’s Health Services Research at Indiana University School of Medicine and an investigator in the Regenstrief Institute, Inc. He completed his medical degree and master’s in medical informatics from Stanford University and his residency in pediatrics and a Robert Wood Johnson Clinical Scholars fellowship at the University of North Carolina at Chapel Hill, where he served on the faculties of pediatrics, biomedical engineering and public health. He is a fellow of the American College of Medical Informatics and the recipient of the Oberst Award, presented to a Fellow of the American Academy of Pediatrics who has made outstanding contributions to the use of technology in pediatrics. His research interests include computer-based decision support systems for primary care, expected utility theory, decision analysis and cost-effectiveness analysis.
Rachel Hess, Director of the Health System Innovation and Research Program, Ann G. and Jack Mark Chair in Internal Medicine. University of Utah Schools of the Health Sciences, USA
Dr. Hess is a general internist and the Director of the University of Utah’s Health System Innovation and Research program. She is the principal investigator of PCORnet’s PaTH CDRN, which included the University of Pittsburgh, UPMC, Temple University Health System, Penn State College of Medicine, Hershey Medical Center, Johns Hopkins University, and Johns Hopkins Health Care.
Chairs:
Brendan Delaney and David Chartash (joint chairs SMDM Medical Informatics Interest Group)