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

(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.