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

Community Engagement Pilot

• Purpose: To inform MNBeacon’s planning and implementationo Based on principles of Deliberative Democracyo 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

• NOTo Focus groupso Community education

4 Community Discussions

• Austin, Red Wing, Rochester, Winona• 10 – 13 participants each (46 total)

o Randomly selected, representative by age, sex, rural/urban residence, occupation (white/blue collar, < 33% health care workers)

o No oversampling for ethnic/racial diversityo Modest stipend, luncho Received packet of educational materials in

advance

Format

• 4 hours long• Local convener• Professional facilitator• Educational presentations and Q&A for first half

o Beacon and its diabetes/asthma initiativeso Minnesota Immunization Information Connectiono Health data privacy and technology

• Second half: closed discussions, with experts available by phone

Red Wing and Austin

Facilitation

• Health IT isn’t partisan• Seeking to understand each other• Not seeking consensus; free to agree or

disagreeo Track consensus that naturally occurso Identify areas of persistent disagreement

Methods

• Each participant had two stacks of large colored post-itso Hopes on one coloro Concerns on another

• Each presented hopes/concerns to the group

• Specific scenarios• Trade-offs

Hopes/Concerns Exercise

Results: Overview

• Optimistic! • Hopes strongly outweighed concerns

o “I hope that all med. facilities participate in the MNBeacon program”

• Biggest hope is “saving lives”o “Maybe there is less staff which will save

costs, too, but saving lives is the ultimate objective that would interest me here”

Hopes

• Improved communication and patient careo “Maybe it would help for faster referrals. And therefore,

hopefully, lead … to quicker treatment”• Improved access to health care records

o “Fast action if an emergency arises such as an asthma attack in school”

o “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”

o “Data across state lines—like for retirees who go south or on trips”

Hopes

• Positive impact on research and public healtho Information leads to better community healtho “Better study [opportunities]: trending, research,

standardization, data mining”• Decreased health care costs

o “Reduce health care redundancies”o “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”

Concerns

• Guard against harms that can be prevented or mitigatedo Privacy, confidentiality, accesso Stigma, discrimination, other harmso Tech problems and data errorso Unintended consequenceso Increased costs, time

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.”

Most Access

• Patient/Parent• Provider• EMT/First responders

Moderate Access

• Schools• Public health agencies

Little/Tightly Restricted Access

• Employers/businesses (including medical device and pharmaceutical manufacturers)

• Government (especially federal government)

• “The Receptionist”

Stigma, Other Harms

• Particularly worried about childreno “That is the one thing I was really concerned

about…that the kids don’t get labeled”• Discrimination in workplace and by

insurers

Tech Problems and Data Accuracy

• Concerns about inaccurate, incomplete datao Some saw real-time electronic files as more

current and accurate than paper• Skepticism about technological and

systems compatibility

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

Unintended Consequences

• 2 sides of the politics coin:o MNBeacon could become source of political

disagreementso 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

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.

Evaluation

• Overall satisfaction: 4.33 out of 5 (5 = most positive)• Most valuable component: Process of engagement

o “To know that they are considering opinions of people”o “Discussion—because everyone had a chance to say

what they thought”o “interact with a group on an important topic”

• Least valuable: Repetition during the presentationso “Presentations got a bit long, but background needed to

be provided”

Pilot Should Be Expanded

• More racial and ethnic diversity• Reach actionable, consensus-based

recommendationso Degree of patient control over levels of accesso Balancing individual control with research and

practical implicationso Consent process, including opt in or opt out

• Timing’s right—common rule changes; secondary use of EHR data

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

Acknowledgements

Methodology• Michael Burgess, U of British

Columbia• Kieran O’Doherty, U of Guelph• Katrin Frimannsdottir*

Project Management & Operations• Matthew Durski*• Cindy Bandel*• Erin Martin*

Recruitment• Ann Harris*• Jeanette Ziegenfuss*• Lila Weberg*• Amy Ratzloff*

Facilitation & Prelim. Analysis• Katrin Frimannsdottir*

Notetakers/Site Assistance• Jen McCormick*• Julie Lundquist*• Shawnessey Mohawk*• Paul Rohde** Affiliated with a MN Beacon partner

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

For More Information

Ellie GarrettMinnesota Center for Health Care Ethics612-964-9425garrett@mnhealthethics.org