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Himss calif 04.11.13


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Himss calif 04.11.13

  1. 1. Participatory Design:The Next Generation of QualitySusan Woods, MD, MPHOregon Health & Science UniversityPortland VA Medical CenterApril 11, 2013
  2. 2. Patient Meaningful UseTransactions Shared DataProfessionalCareSelf-CareCommunityAhern DK, Woods SS, Lightowler et al. Promise of and potential for patient-facing technologies to enable meaningful use. Am J Prev Med. 2011
  3. 3. Shenkin B, Warner D. New England Journal Medicine 1973
  4. 4. Patient HealthRecord Access• Transparent• Fluid• Nourish4
  5. 5. 5Patient centered care empowerspatients to participate in theirhealth and healthcare. With morecomplete access to their healthinformation, patients canbecome active partners in theircare.
  6. 6. 6
  8. 8. Evidence is in: benefits are high.It’s what patients want.Will drive participatory care.Shared Records
  9. 9. 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.
  10. 10. 10
  11. 11. Open Notes Study• Robert Wood Johnson Foundation PioneerPortfolio• Beth Israel Deaconess, Harborview, Geisinger• 100 Primary Care providers and >13,000patients• 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 aLook Ahead
  12. 12. Delbanco T et. al. Ann Intern Med, 2012% AgreePatients PCPsTakes 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 60 311-Year Follow-Up Surveys:Patient and PCP Views of OpenNotes
  13. 13. Delbanco T et. al. Ann Intern Med, 2012% AgreePatients PCPsFelt 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
  14. 14. 14Woods S et al. J Med Internet Res 2013;15(3):e65MHV Pilot: Patient ViewsTheme 1:SupplementscommunicationTheme 2:Enhanced self-careTheme 3:Patient participation incareTheme 4: Observations onnotes/EHR
  15. 15. Communication Tool“I can go in and ask more intelligent questionsand we don‟t have to spend as much time withthem explaining everything to me.”“I could see my results. I could see what wasgoing on and didn‟t get stressed out waiting tohear back from somebody who might never call.”
  16. 16. Knowledge and Self-Care“Made me feel more responsible for myself, likethere‟s no excuses. You know, it‟s right there, youknow. You can‟t use „the doctor didn‟t tell you‟.”“You could pop over to Google or the library, andsee what it‟s saying instead of sitting theresweating it out trying to figure out what it is.”
  17. 17. Patient Participation in Care: Quality“I had an ultrasound on my liver and saw theresults. It said, „Re-do in 6 months‟. Six monthscame and nothing happened. So I called thedoctor. He says, „Yeah, they did say that‟. So, if Ihadn‟t reminded him, I wouldn‟t have got it.”
  18. 18. My Oncologist was an up-front guy. But I foundout he wasn‟t as up front as I thought, with whathe wrote. When I went to see him, I said, „I‟d liketo know, what you think and what you know, andwhat you‟re predicting. Rather than just write it inthere, tell me and then write it‟.Patient Participation in Care: Quality
  19. 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
  20. 20. WorkloadStressNotesClinician Concerns
  21. 21. It‟s a good time to re-designour work.
  22. 22. ParticipatoryDesignToward patient participationInformedPatientPatientCenteredTeamsParticipatoryCare
  23. 23. Talk to Patients. They Know Cool Stuff You Don’t.