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
Participatory Design:The Next Generation of QualitySusan Woods, MD, MPHOregon Health & Science UniversityPortland VA Medical CenterApril 11, 2013
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
Shenkin B, Warner D. New England Journal Medicine 1973
January 2013: Much More DataPROBLEMListDEMOGRAPHICSPROGRESSNotesMICRO-BiologyVITALS& ReadingsPATHOLOGYSurgical, Cytology,EMEKGListRADIOLOGYReportsCONTINUITYOF CAREDOCUMENTVA 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.
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
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
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
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
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.”
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.”
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.”
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
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