Participatory Design: The Next Generation of Quality Susan Woods, MD, MPH Oregon Health & Science University Portland VA Medical Center April 11, 2013

Patient Meaningful Use Ahern DK, Woods SS, Lightowler et al. Promise of and potential for patient- facing technologies to enable meaningful use. Am J Prev Med. 2011

Shenkin B, Warner D. New England Journal Medicine 1973

Patient Health Record Access Transparent Fluid Nourish 4

5 Patient centered care empowers patients to participate in their health and healthcare. With more complete access to their health information, patients can become active partners in their care.

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January 2013: Much More Data PROBLEM List DEMOGRAPHICSPROGRESS Notes MICRO- Biology VITALS & Readings PATHOLOGY Surgical, Cytology, EM EKG List RADIOLOGY Reports CONTINUITY OF CARE DOCUMENT VA CCD

Shared Records

Voice of the Veteran Let me see all my health records. Help me care for myself. Help me manage my medications. Let me add to the record. Help me understand my information. Help me manage my appointments. Let me share my information outside VA. Notify me. Help me connect with other Veterans. Make it easy for me to send you information.

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Open Notes Study Robert Wood Johnson Foundation Pioneer Portfolio Beth Israel Deaconess, Harborview, Geisinger 100 Primary Care providers and >13,000 patients notification with new note upload 2010 to 2011 (access continues) Baseline and follow-up surveys Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead Ann Intern Med, October 2, (7):

Delbanco T et. al. Ann Intern Med, 2012 % Agree PatientsPCPs Takes better care of self7028 Better understand conditions8441 Remembers care plan better8444 More prepared for visits7336 More in control of care8449 Take medications better Year Follow-Up Surveys: Patient and PCP Views of OpenNotes

Delbanco T et. al. Ann Intern Med, 2012 % Agree PatientsPCPs Felt offended28 More confusing than helpful321 Worries more742 Concerned about privacy Year Follow-Up Surveys: Patient and PCP Views of OpenNotes

14 Woods S et al. J Med Internet Res 2013;15(3):e65 J Med Internet Res 2013;15(3):e65 MHV Pilot: Patient Views Theme 1:Supplements communication Theme 2:Enhanced self-care Theme 3:Patient participation in care Theme 4: Observations on notes/EHR MHV Pilot: Patient Views Theme 1:Supplements communication Theme 2:Enhanced self-care Theme 3:Patient participation in care Theme 4: Observations on notes/EHR

Communication Tool “I can go in and ask more intelligent questions and we don’t have to spend as much time with them explaining everything to me.” “I could see my results. I could see what was going on and didn’t get stressed out waiting to hear back from somebody who might never call.”

Knowledge and Self-Care “Made me feel more responsible for myself, like there’s no excuses. You know, it’s right there, you know. You can’t use ‘the doctor didn’t tell you’.” “You could pop over to Google or the library, and see what it’s saying instead of sitting there sweating it out trying to figure out what it is.”

Patient Participation in Care: Quality “I had an ultrasound on my liver and saw the results. It said, ‘Re-do in 6 months’. Six months came and nothing happened. So I called the doctor. He says, ‘Yeah, they did say that’. So, if I hadn’t reminded him, I wouldn’t have got it.”

My Oncologist was an up-front guy. But I found out he wasn’t as up front as I thought, with what he wrote. When I went to see him, I said, ‘I’d like to know, what you think and what you know, and what you’re predicting. Rather than just write it in there, tell me and then write it’. Patient Participation in Care: Quality

Observations on Notes & Records Problematic language Errors and inconsistencies ‘Boiler plate’ documentation Difficulty logging in, loss of Program Initial stress with full disclosure – Better to have it all, then none

Clinician Concerns

It’s a good time to re-design our work.

Participatory Design Toward patient participation

Talk to Patients. They Know Cool Stuff You Don’t.