J Eline (Ellie) Garrett, JD*; Jenny Ostergren, MPH**;

1. Electronic Information Exchange to Improve Community Health: Engaging Citizens in Ethical Tradeoffs J Eline (Ellie) Garrett, JD*; Jenny Ostergren, MPH**; Marguerite Robinson MAR, MA**; Barbara A. Koenig, PhD*** *Minnesota Center for Health Care Ethics **Mayo Clinic Biomedical Ethics Research Unit ***University of California, San Francisco

2. Community Engagement Pilot • Purpose: To inform MNBeacon’s planning and implementation • Based on principles of Deliberative Democracy • What are your hopes and concerns for MNBeacon? • How much control do you want over EHR? • How much data access by whom and for what? • Trade-offs • NOT • Focus groups • Community education

3. 4 Community Discussions • Austin, Red Wing, Rochester, Winona • 10 – 13 participants each (46 total) • Randomly selected, representative by age, sex, rural/urban residence, occupation (white/blue collar, < 33% health care workers) • No oversampling for ethnic/racial diversity • Modest stipend, lunch • Received packet of educational materials in advance

4. Format • 4 hours long • Local convener • Professional facilitator • Educational presentations and Q&A for first half • Beacon and its diabetes/asthma initiatives • Minnesota Immunization Information Connection • Health data privacy and technology • Second half: closed discussions, with experts available by phone

5. Red Wing and Austin

6. Facilitation • Health IT isn’t partisan • Seeking to understand each other • Not seeking consensus; free to agree or disagree • Track consensus that naturally occurs • Identify areas of persistent disagreement

7. Methods • Each participant had two stacks of large colored post-its • Hopes on one color • Concerns on another • Each presented hopes/concerns to the group • Specific scenarios • Trade-offs

8. Hopes/Concerns Exercise

9. Results: Overview • Optimistic! • Hopes strongly outweighed concerns • “I hope that all med. facilities participate in the MNBeacon program” • Biggest hope is “saving lives” • “Maybe there is less staff which will save costs, too, but saving lives is the ultimate objective that would interest me here”

10. Hopes • Improved communication and patient care • “Maybe it would help for faster referrals. And therefore, hopefully, lead … to quicker treatment” • Improved access to health care records • “Fast action if an emergency arises such as an asthma attack in school” • “That the information that a provider needs is easily accessible to basically decrease … return visits or [emergencies], and that can benefit both patient and provider” • “Data across state lines—like for retirees who go south or on trips”

11. Hopes • Positive impact on research and public health • Information leads to better community health • “Better study [opportunities]: trending, research, standardization, data mining” • Decreased health care costs • “Reduce health care redundancies” • “Good integration of data among groups will be successful in producing effective, good health for reasonable cost and shared expenses among patients and care providers”

12. Concerns • Guard against harms that can be prevented or mitigated • Privacy, confidentiality, access • Stigma, discrimination, other harms • Tech problems and data errors • Unintended consequences • Increased costs, time

13. Many had Privacy Concerns; A Few Did Not • “Obviously, I want my doctor to have my information and I want me to have [it]. I don’t want the other guy to have [it]…anybody who is not me and my doctor, basically, or that is dealing right there on the ground with me, doing my medical stuff.” • “I think everyone would be willing to give up a little privacy if it meant saving their life or your son’s life.” • “When I think about it, what are they going to do with my health record? If you want my health record, go for it! If you want to steal mine, good luck to ya!... I feel like everybody is looking at my information all the time anyway, you know.”

14. Most Access • Patient/Parent • Provider • EMT/First responders

15. Moderate Access • Schools • Public health agencies

16. Little/Tightly Restricted Access • Employers/businesses (including medical device and pharmaceutical manufacturers) • Government (especially federal government) • “The Receptionist”

17. Stigma, Other Harms • Particularly worried about children • “That is the one thing I was really concerned about…that the kids don’t get labeled” • Discrimination in workplace and by insurers

18. Tech Problems and Data Accuracy • Concerns about inaccurate, incomplete data • Some saw real-time electronic files as more current and accurate than paper • Skepticism about technological and systems compatibility

19. Cost and Time Concerns • Up-front costs for buying/adapting hardware/software • Up-front data entry time and cost • Time for data entry could detract from patient care • Concerns that not all who should be part of MNBeacon could afford it (e.g., small schools) • Concern whether current funding and partners’ commitments were sufficient to implement/maintain MNBeacon

20. Unintended Consequences • 2 sides of the politics coin: • MNBeacon could become source of political disagreements • Worries about political barriers to MNBeacon’s success • Angst from a few about “over-systemization” or “loss of common sense” in medical practice, as providers increasingly depend on computers

21. Participants’ Recommendations • Allow patients to decide what kind of access they want to allow and to whom. • Give patients time to process what they’re being asked. Educate them with multiple methods. • Expand community engagements to include more diverse populations. • Monitor MNBeaon progress carefully. Stakes are high. Take time and resources to do it well.

22. Evaluation • Overall satisfaction: 4.33 out of 5 (5 = most positive) • Most valuable component: Process of engagement • “To know that they are considering opinions of people” • “Discussion—because everyone had a chance to say what they thought” • “interact with a group on an important topic” • Least valuable: Repetition during the presentations • “Presentations got a bit long, but background needed to be provided”

23. Pilot Should Be Expanded • More racial and ethnic diversity • Reach actionable, consensus-based recommendations • Degree of patient control over levels of access • Balancing individual control with research and practical implications • Consent process, including opt in or opt out • Timing’s right—common rule changes; secondary use of EHR data

24. Reflections from the CE Team • Community engagement about MNBeacon warranted, feasible and very valuable • Geographic diversity important—each community had own character • Much to be learned about values re: health IT, secondary use

25. Acknowledgements Methodology • Michael Burgess, U of British Columbia • Kieran O’Doherty, U of Guelph • KatrinFrimannsdottir* Project Management & Operations • Matthew Durski* • Cindy Bandel* • Erin Martin* Recruitment • Ann Harris* • Jeanette Ziegenfuss* • Lila Weberg* • Amy Ratzloff* Facilitation & Prelim. Analysis • KatrinFrimannsdottir* Notetakers/Site Assistance • Jen McCormick* • Julie Lundquist* • Shawnessey Mohawk* • Paul Rohde* * Affiliated with a MN Beacon partner

26. Acknowledgements Presenters • Kari Bomash, Dorsey & Whitney • Christopher Chute* • Larry Edmonson* • John Goodman* • Margene Gunderson* • Eric Klavetter* • Teresa Miller* • Victor Montori* • Mary Severson* • Peter Sternberg* • Sally Trippel* • Michael Ubl* • Barbara Yawn* * Affiliated with a MN Beacon partner

27. For More Information Ellie Garrett Minnesota Center for Health Care Ethics 612-964-9425 garrett@mnhealthethics.org