Participatory Design: The Next Generation of Quality

Susan Woods, MD, MPHOregon Health & Science University

Portland VA Medical Center

April 11, 2013

Patient Meaningful Use

Transactio

ns

Shared

Data

Profession

al Care

Self-Care

Community

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

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Patient Health Record Access

• Transparent• Fluid• Nourish

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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

PROBLEMList

DEMOGRAPHICS

PROGRESSNotes

MICRO-Biology

VITALS& Readings

PATHOLOGYSurgical, Cytology,

EM

EKGList

RADIOLOGYReports

CONTINUITYOF CARE

DOCUMENTVA CCD

Evidence is in: benefits are high.

It’s what patients want.

Will drive participatory care.

Shared Records

Voice of the VeteranLet 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• Email 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, 2012 157(7):461-470

Delbanco T et. al. Ann Intern Med, 2012

% AgreePatients PCPs

Takes better care of self 70 28Better understand conditions 84 41Remembers care plan better 84 44More prepared for visits 73 36More in control of care 84 49Take medications better 60 31

1-Year Follow-Up Surveys:Patient and PCP Views of OpenNotes

Delbanco T et. al. Ann Intern Med, 2012

% AgreePatients PCPs

Felt offended 2 8More confusing than helpful 3 21Worries more 7 42Concerned about privacy 32 --

1-Year Follow-Up Surveys:Patient and PCP Views of OpenNotes

14Woods S et al. J Med Internet Res 2013;15(3):e65

MHV Pilot: Patient ViewsTheme 1: Supplements communicationTheme 2: Enhanced self-careTheme 3: Patient participation in careTheme 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

Workload

Stress

Notes

Clinician Concerns

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

Participatory Design

Toward patient participation

Informed Patient

Patient Centered Teams

Participatory Care

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