243564 Electronic information exchange to improve community health outcomes: Engaging citizen voices in ethical tradeoffs

Monday, October 31, 2011: 2:30 PM

J. Eline Garrett, JD , Health Policy & Public Engagement Consultant, Minneapolis, MN
Jenny Ostergren, MPH , Biomedical Ethics Research Unit, Mayo Clinic, Rochester, MN
Marguerite Robinson, MAR, MA , Biomedical Ethics Research Unit, Mayo Clinic, Rochester, MN
Barbara Koenig, PhD , Institute of Health & Aging, UCSF School of Nursing, San Francisco, CA
(1) Background: The meaningful use of health information technology (HIT) has potential to improve health care quality, efficiency and population health. The Beacon program in an 11-county area of southeastern Minnesota (MNBeacon) is taking electronic health information exchange (EHIE) to the next level, demonstrating the collaborative potential of public health agencies, school districts, health systems, HIT vendors and others to foster improved care and outcomes for childhood asthma and adult Type II diabetes. Expanding EHIE beyond health care settings to public health and schools has obvious appeal for population health, but trade-offs between individual privacy and population health become inevitable. (2) Objective: MNBeacon piloted a deliberative democratic process in 4 counties to glean area residents' values, hopes and concerns about EHIE, and is using results to help shape its program. (3) Methods: Each 4-hour session included educational presentations and opportunities to ask questions of experts. Professional facilitators engaged participants (demographically representative of their counties), using structured exercises and open-ended questions. Sessions were audio-recorded; recordings were transcribed, open-coded and analyzed with the aid of NVivo. (4) Results: Participants balanced concerns about cost, privacy and system failure with hopes that EHIE would improve health care, foster better communication with clinicians, schools and public health agencies, and inform research that would benefit society. Participants expressed differing levels of comfort and trust concerning who should have access to what kinds of data. They volunteered concerns about data security, harms if data were misused or inaccurate, some skepticism about cost savings, and propriety of governmental involvement in EHIE. Nonetheless, there was striking optimism regarding the utility of EHIE that outweighed concerns. Results will be shared showing how public input is shaping MNBeacon design and implementation. (5) Conclusion: The pilot demonstrates the utility of public engagement on the highly technical topic of developing and implementing EHIE.

Learning Areas:
Communication and informatics
Ethics, professional and legal requirements
Program planning
Provision of health care to the public
Public health or related public policy

Learning Objectives:
1. Discuss feasibility and value of using public engagement to elicit values about electronic exchange of health information with public and education sectors; 2. List five concerns and five hopes participants voiced concerning such data exchange; 3. Describe how participants balanced their hopes and concerns, and what issues mattered most to them in the end.

Keywords: Ethics, Health Information Systems

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I helped facilitate the public engagement sessions described in the abstract and led the data analysis team. I am experienced in using public engagement to influence public health policy making and have published on the topic.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.