The next generation of health information technology organizes data into large, networked systems in the pursuit of efficient, engineered solutions to the well-known and chronic maladies of the existing U.S. health infrastructure: spiraling costs, poor health outcomes, safety issues, unproductive research enterprises, and failure to implement known clinical best practices. More than simply “Big Data,” these systems are arranged as “learning health systems,” multi-stakeholder federations that gather and analyze data to create useful knowledge that is disseminated to all stakeholders. From a technological perspective, making these systems interoperable is a formidable, but highly plausible task. However, harnessing the power of health data for learning strains current ethical, legal, and social paradigms for how health information should be collected, stored, accessed, used, and destroyed. Major challenges for learning health systems include: (a) defining the functions of data and big data use in terms of research, clinical care, quality, public health, or commercial enterprise, (b) identifying which, possibly contradictory, ethical frameworks should guide decision-making, and (c) determining how the policy environment supports or challenges this work. If the primary use of data is, above all, to learn, what are the ethical implications of, for example, autonomy and social benefit? Which policies should apply and what are the concomitant obligations of the parties involved? There is a major gap in understanding how initiatives that strive to realize the vision of learning health systems should normatively and empirically engage the ethical, legal, and social aspects of their work.
To address this gap, we will hold a one-day symposium at the University of Michigan to present and discuss a series of working papers to set the agenda for research and on the Ethical, Legal, and Social Implications of and for Learning Health Systems. In the planning, implementation, and dissemination of our proposed work, we will engage key stakeholders including patients and community, practitioners (e.g., health care providers, health information infrastructure engineers), and scholars engaged in research on the ethical, legal, and social implications of learning health systems and parallel initiatives such as personalized medicine and implementation science. The symposium’s working papers will be submitted to the Journal of Learning Health Systems for a 2017 Special Issue. In so doing, we will identify areas for collaboration, scholarship, and practice that will support responsible research and innovation in local, state, national, and global learning heath system initiatives that enables a diverse group of stakeholders to develop meaningful roles in shaping and applying ELSI-LHS research.
Confirmed speakers include: Jeff Botkin, Vence Bonham, Charles Bosk, Ray De Vries, Chuck Friedman, Scott Kim, John Lantos, Sharon Kardia, Kent Key, Patricia Kingori, David Magnus, Todd Rice, Richard Sharp and Tania Simoncelli