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Himss calif 04.11.13
1. Participatory Design:
The Next Generation of Quality
Susan Woods, MD, MPH
Oregon Health & Science University
Portland VA Medical Center
April 11, 2013
2. Patient Meaningful Use
Transactions Shared Data
Professional
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
5. 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.
7. January 2013: Much More Data
PROBLEM
List
DEMOGRAPHIC
S
PROGRESS
Notes
MICRO-
Biology
VITALS
& Readings
PATHOLOGY
Surgical, Cytology,
EM
EKG
List
RADIOLOGY
Reports
CONTINUITY
OF CARE
DOCUMENT
VA CCD
8. Evidence is in: benefits are high.
It’s what patients want.
Will drive participatory care.
Shared Records
9. 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.
11. 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 surveysInviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a
Look Ahead
12. Delbanco T et. al. Ann Intern Med, 2012
% Agree
Patients PCPs
Takes better care of self 70 28
Better understand conditions 84 41
Remembers care plan better 84 44
More prepared for visits 73 36
More in control of care 84 49
Take medications better 60 31
1-Year Follow-Up Surveys:
Patient and PCP Views of OpenNotes
13. Delbanco T et. al. Ann Intern Med, 2012
% Agree
Patients PCPs
Felt offended 2 8
More confusing than helpful 3 21
Worries more 7 42
Concerned about privacy 32 --
1-Year Follow-Up Surveys:
Patient and PCP Views of OpenNotes
14. 14
Woods S et al. 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
15. 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.”
16. 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.”
17. 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.”
18. 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
19. 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
Patient access to health records has important value: Transparency. Patients and families can now see what clinicians see and what they write. Fluidity or liquidity of data. Information can be readily shared, patient-to-caregivers, or patient-non-VA providers. Patients are equipped/prepared -- nourished by their data, and can play a more active role in their care.
Demonstration of Blue Button – login to MHV website using VISN 20 Test Patient
There are important rationale to provide VA patients with their own health care data – in addition to the fact that it’s a legal right. Veterans want it.
We know a great deal about what Veterans want, though evaluations, focus groups and discussions across the nation. An important report, ‘Voice of the Veteran’ tell us that VA patients are like any patients, and like all of us – as we are all consumers of healthcare.They wantTo see their health record dataHelp understanding the informationTo add to the recordTo share their information outside the VA.
Statements made from VA patients who accessed their electronic health record information –
In talking to many health professionals, and reading the literature, there are several types of concerns. These were presented in the Open Notes papers, before the study began. Issues center on 2 areas:My workload will be more. It makes sense to think – as a clinician, I’ll have to spend more time explaining. I’ll get more calls, I’ll get more secure messaging. I think with some patients, that will be the case. But remember, what happens when patients are more engaged in their care? When they spent time and energy doing their own tracking, and researching? They are more activated. And we know that this leads to higher satisfaction, and better outcomes. And as some of our MHV Pilot patients told us, they decide they don’t need to come in or call us. So we predict: HOW we work will change, but the total work will not.Patient stress. Patient worry. First, it was much lower than predicted. Second, who says that’s a bad thing? Healthcare constantly complains about patients taking responsibility with there own care. So we predict: the sky will not fall, it will get bluer. Our notes will change. This is one where we just don’t have enough data. This is another area where the changes may end up being for the better. With patients as active participants, notes are likely to become more accurate and more complete? Will the language change? Will we lose the medical jargon? Keep things out that need to be there? We hope to hear from YOU on this journey, and find out.Let’s look at the results of our last poll question:
That brings us to the 5th and LAST Top Reason for shared records: It’s time for us to re-design our work.
So here’s the journey – one that I hope that Open Notes helps us on. Going from giving patients information, to focusing on patient centered medical homes and team based care, to delivering care where patients are partners on our teams.What would it take to move even further – to have patients and families HELP US design and develop our tools? That’s what I call participatory design.
Patients are cool. They know stuff you don’t. Photocredit: wearewhatwedo.org
