OpenNotes: Breaking barriers, changing culture, engaging patients

Transcription

1 OpenNotes: Breaking barriers, changing culture, engaging patients Patient Experience Conference 2018 Liz Salmi OpenNotes Amy Cohen, PhD, BCBA, PMP The University of Vermont Medical Center Steve O Neill, LICSW, BCD, JD OpenNotes and Beth Israel Deaconess Medical Center #OpenNotes

2 Liz Salmi Senior Multimedia Communications I have no conflicts. Funding sources: Cambia Health Foundation, Gordon and Betty Moore Foundation, Peterson Center on Healthcare, Robert Wood Johnson Foundation, PCORI #OpenNotes

3 What is OpenNotes? National movement dedicated to making healthcare more open and transparent Initiative to give patients access to their medical providers notes via secure patient portals Not a vendor product or software OpenNotes is supported by a combined grant from the following organizations:

4 Clinical notes ü Document medical history ü Interpret patient needs and communication ü Outline next steps ü Serve as a reminder for future visits ü Act as bread crumbs for other healthcare providers #OpenNotes

5 The Note vs. the After Visit Summary What the doctor writes aka notes vs. What the patient sees #OpenNotes Salmi, L. Medical record. (6 Feb. 2017)

6 Original study: 2010 Research and demonstration project 105 PCPs and 20,000 patients in Boston (BIDMC), rural Pennsylvania (Geisinger), and Seattle safety net hospital (Harborview) Now replicated at VA, Kaiser, Cedars-Sinai, and many other sites #OpenNotes Delbanco, Walker, et al, Annals of Internal Medicine

7 Initial study findings 3 out of 4 patients reported: Taking better care of themselves Understanding health and medical conditions better Feeling more in control of their health Being better prepared for visits Doing better taking medications as prescribed #OpenNotes Delbanco, Walker, et al, Annals of Internal Medicine

8 21+ million people have access to clinical notes OpenNotes available at all U.S. Department of Veterans Affairs Medical Centers nationwide. opennotes.org/map

9 21 MILLION = less than 6% of U.S. population #OpenNotes

10 Rights under HIPAA See a copy of your medical record Get a copy of your medical record Change incorrect information Find out who has seen your health information #OpenNotes

11 My notes

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17 Salmi, L. Medical record. (2010)

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19 Printed record = $ Digital record = $45 for 3 DVDs Salmi, L. Office visit. Kaiser Medical Secretaries. (23 Feb 2017)

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21 Salmi, L. Medical record. (16 Dec 2017)

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24 Of the 40,000 Google searches made every second, 2,000 are health-related #OpenNotes Wilbanks, J.T. & Topol, E.J. Stop the privatization of health data. Nature 535, (21 July 2016) doi: /535345a

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26 People who read notes Have a better understanding of their health and medical conditions Better recall and follow their care plan Feel more in control of their health #OpenNotes Delbanco et al, Ann Intern Med 2012

27 People who read notes Take better care of themselves Do a better job taking medications as prescribed Can identify inaccuracies in the record and play a role in the safety of care #OpenNotes Delbanco et al, Ann Intern Med 2012

28 People who read notes Feel comfortable sharing notes with care partners and others involved in their care Can communicate more clearly, helping to strengthen the partnership between themselves and their health care team #OpenNotes Delbanco et al, Ann Intern Med 2012

29 99% of people are likely to feel the same or better about their doctor after reading just one note #OpenNotes Bell SK, Gerard M, Fossa A, et al A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships. BMJ Qual Saf Published Online First: 13 December doi: /bmjqs

30 Older, non-caucasian patients, with poorer health, and lower formal education more likely to feel better about their doctor when reading notes #OpenNotes Bell SK, Gerard M, Fossa A, et al A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships. BMJ Qual Saf Published Online First: 13 December doi: /bmjqs

31 Caregivers benefit as much as patients 88% of patients and 86% of caregivers had better formulated questions for the doctor 86% of patients and 82% of caregivers had more productive discussions about the patient s care 94% of patients and their caregivers said they had a better understanding of patient health conditions, better remembered the patient s care plan, and felt more in control of care 71% of both patient and caregivers reported patients taking medications as prescribed more often #OpenNotes Wolff, et al. JAMIA

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33 Liz Salmi Senior Multimedia Communications Manager Thank #OpenNotes

34 The heart and science of medicine. UVMHealth.org/MedCenter The University of Vermont Medical Center OpenNotes Journey Amy Cohen, PhD, BCBA, PMP Director of Patient and Family Experience University of Vermont Medical Center Beryl Institute Patient Experience Conference 2018

35 Patient- and Family-Centered Care At the University of Vermont Medical Center, we value patients and their families and seek their participation in everything we do. 35

36 PFCC Principles Dignity & Respect Providers listen to and honor patient and family perspectives, choices and incorporate their values, beliefs into care delivery. Collaboration Patients, families and providers collaborate in policy, program development, implementation and care delivery. Information Sharing Patients and families receive timely, complete and accurate information in order to effectively participate in care and decision-making Participation Patients & Families are encouraged and supported to participate in care and decision making. 36

37 Strategic Movement Towards Patient- and Family-Centered Care Guided by Principles Dignity and Respect Patient/family stories Participation Welcoming Patient- and family-centered nurse report Interdisciplinary bedside rounding Collaboration through intentionally engaging patients and families Recruitment and deployment of patient/family advisors Patient & Family Advisory Councils Engaging advisors in key leader hiring processes 37

38 What about information sharing? Goal to identify a strategic change that: addressed patient/family priorities and need for improved transparency demonstrated we were prepared to walk the walk OpenNotes established as a year 3 PFCC goal to improve information sharing and increase reciprocal engagement between patients and providers CMO & CMIO introduction 38

39 The UVMMC Approach to OpenNotes Idea Strategic Plan Leadership Engagement Tactics Educate Deploy Evaluate 39

40 Strategic Plan 40

41 Engaging Leadership Power of the OpenNotes map OpenNotes Map at the time of our implementation 41

42 Engaging Stakeholders Multi-disciplinary workgroup formation Representation from each health care service/department Intentional engagement of skeptics Inclusion of patients and families 42

43 Patients and Families as Partners in OpenNotes Patient/Family advisor participation on the PFCC Executive Steering Committee Initial introduction and ongoing updates at Patient and Family Advisory Council Recruitment, selection and support of advisors for OpenNotes workgroup Making the right selection Do we really need 3? Provider vs. patient priorities Advisor review of education/communication materials 43

44 Tactics Workgroup Patients and Families Skeptics Purpose Diverse needs/issues Buy-in Scope Sequence Education Plan Built-in educators/champions 44

45 Tactics 45

46 Tactics Workgroup Recommendations Adequate resources must be available to providers and staff for education and roll out Contingency plan for unexpected volumes of messages Education for patients regarding standards of note content and structure Avoid incomplete or inadequate (e.g. dictation completed ) note distribution 46

47 Tactics Included all ambulatory care appointments, including the ED All providers included- opting out is not an option Any note can be excluded at discretion of the provider Only exception- behavioral health providers; Opt-in per note Adolescents- shared with adolescent, not with proxy Ability to disable patient portal access Plan for patient questions/requests for changes: provider practice, followed by Patient and Family Advocacy, if needed 47

48 Educate Providers Leadership introduction One-pager & FAQ documents Faculty meeting presentations by champions focused heavily on data Patients and Families: Clinic flyers/posters Rack cards Patient portal at launch Notes available alert 48

49 Deploy Soft opening- May 31, 2017 Troubleshooting, not evaluating for feasibility Big Bang June 14,

50 Evaluate 50

51 Evaluate 51

52 Six Month Check-in It s a non-event from the provider perspective. - UVM Medical Group Leadership This is a giant step forward. I have recently been a patient at UVM in primary care, specialist, surgery, inpatient, ED, all within the last 2 weeks. The notes were particularly helpful with aftercare instructions and reminded me of follow up expectations. Having these noted will support my recollections of those often introspective moments. - Patient Feedback 52

53 Next Steps Sharing inpatient discharge summaries with patients Increased public awareness 53

54 Thank you! Amy Cohen Director of Patient & Family Experience (802)

55 Opening Our (Therapy and Medical) Notes to Our Patients Steve O Neill, LICSW, BCD, JD Social Work Manager for Psychiatry, Primary Care, ID, Pain, and Opioid Services Associate Director for Ethics Programs Behavioral Health Specialist for OpenNotes Beth Israel Deaconess Medical Center Faculty, Center for Bioethics Department of Social Medicine Harvard Medical School Beryl Institute April, 2018

56 No Conflicts..to report Funding sources: Cambia Health Foundation, Gordon and Betty Moore Foundation, Peterson Center on Healthcare, Robert Wood Johnson Foundation 56

57 Goals Share early impressions from several years of national experience with fully open medical records, especially mental health Notes as (narrative) therapy for behavioral health and mental illness OpenNotes as a movement...transparency, trust and partnership! 57

58 Relevant BIDMC History 1972 Patient Bill of Rights 1976 Orders Not to Resuscitate : NEJM 1986 First Electronic Health Records (Warner Slack, MD and Howard Bleich, MD) 2008 Preventable Harm Initiative 2010 OpenNotes starts in Primary Care 2013 All Medical/Surgical/Specialty notes opened up 2014 Preventable Harm to Respect/Dignity Initiative 2014 OpenNotes for Behavioral Health starts 58

59 Relevant BIDMC History Culture of Transparency Culture of Respect 59

60 About the OpenNotes movement Began in 2010 with 105 volunteer primary care doctors and 19,000 of their patients in Boston, rural Pennsylvania, and the Seattle inner city in Washington state. The doctors invited the patients to read their notes via electronic portals Now, more than 20 million patients in the USA, thousands of doctors, nurses, therapists, trainees, physician assistants, case managers, and other clinicians are sharing notes What s going on? Funded primarily by the Robert Wood Johnson Foundation 60

61 21+ Million Patients Have Access to Notes

62 Three Principal Questions Would OpenNotes help patients become more engaged in their care? Would OpenNotes be the straw that breaks the therapist s back? After 1 year, would patients and therapists want to continue? 62

63 Always start with..what is Best for the Patient??!! 63

64 Staff 15 Psychiatrists/Therapists In Psychiatry Department 28 Social Work Staff agreed to pilot; 4 declined; pediatric therapists and fellows excluded; staff turn over; or no eligible patients = 24 started 440 patients at start; Currently better than 3000 participating in open therapy notes 64

65 BIDMC Social Work Staff Fears 1. Increased Work Burden feeling a sense of pressure to get notes entered in a timely manner so that they can be useful to the patient 2. Misunderstanding: I m concerned about patients misunderstanding information in the notes On the other hand, I am hopeful that the open notes may actually enhance the therapy process and promote greater communication/understanding on both sides. 65

66 BIDMC Social Work Staff Fears 3. Re-languaging Notes and Processing of Notes-.will they be angry about certain content?! 4. Patients with severe mental illness, especially psychosis and paranoia will flee 5. It s one thing to tell them in session we think they are having paranoid thoughts and another for them to read it at home alone 66

67 Additional Issues: Domestic Violence and Safety Exclusions Who is note intended for? Would OpenNotes adversely effect teaming communications? Obsessive patients ( I ve spent my whole life learning not to double think. ; When I go to my mechanic, I don t want to look under the hood. Same here! ) Paranoid patients ( I d be petrified to look. I m not gonna do it. ) Patients in denial and premature info 67

68 Social Work Therapist Work Group: FAQ s and scripts/info sheets developed Anticipating reactions or feedback from patients and colleagues and staff Thesaurus approach for altering language 68

69 Additional Issues Ruining Psychotherapy (NYTimes, Washington Post, etc public comments after articles) Destroying the privacy expectations and the fiduciary relationship whereby patients entrust us with their secrets, especially if already agreed to under informed consent (ie- monitoring) Helpful only for high functioning, well educated patients Will need to hide our diagnostic impressions 69

70 Patients were pleased Better than 90% of patients agreed that opening up therapy notes is a good idea! Better than 85% of patients want to continue having notes available Few patients said reading notes made them feel Judged (Less than 15%) Worried (Less than 10%) Offended (Less than 5%) (Delbanco, Walker, et al, Ann Intern Med, 2012) 70

71 Patients were pleased Patients with adverse effects tended to clarify these concerns as underlying concerns such as privacy or already existing issues; or misinterpreted questions when asked Biggest issue, as in medicine, seems to be whether there is concordance between what the therapist says in session and what they write in the note (Delbanco, Walker, et al, Ann Intern Med, 2012) 71

72 Note Reading The vast majority of patients never mentioned to their therapist about having read their notes Note Reading drops off due to redundancy.. 72

73 Privacy vs. Confidentiality 18% shared notes with others (20-42% in medicine), mostly family 73

74 The NIGHTMARE Patient!! Recurrent staff concerns about the nightmare patient reported at BIDMC, as well as other practices. 74

75 The NIGHTMARE Patient!! Is this really an index for contagious staff angst??? These are labor intensive patients irrespective of the therapeutic interventions.! 75

76 Therapy Patient Examples 1. Self-deprecatory Patient 2. Paranoid/Severely Depressed Patient 3. Delusional Patient 4. The Patient with a Documentation Error

77 Patients reported important clinical benefits Better than 50% felt more in control of their care Better than 50% reported feeling better at self-care Better than 40% reported better remembering what working on in therapy Better than 40% felt more engaged in their therapy Better than 50% felt better able to trust their therapist 77

78 The Bottom Line Better than 80% of patients wanted to continue to be able to see their visit notes online. Better than 60% of patients said availability of open notes would affect their future choice of a therapist. Not one therapist or patient asked to stop, and almost all have since joined. And now.. 78

79 Lessons Learned 70/30 Rule Stigma, especially in mental health! Mainstream!! Professionals Fears: looking foolish or incompetent Active vs. Passive Utilizers! 79

80 Importance of Notifications Reading rates dropped when GHS stopped sending patients messages to let them know a new note was available 100 Notes viewed within 30 days of availability (%) Notifications to view notes stop at GHS and continue at BIDMC 0 Jun-10 Jul-10 Aug-10 Sep-10 Oct-10 Nov-10 Dec-10 Jan-11 Feb-11 Mar-11 Apr-11 ay-11 Jun-11 Jul-11 Aug-11 Sep-11 Oct-11 Nov-11 Dec-11 Jan-12 Feb-12 Mar-12 Apr-12 ay-12 Jun-12 BIDMC GHS

81 Communication Engagement Trust and the best possible outcomes 81

82 (Culture of Respect/Transparency)

83 OurNotes Collaborative Electronic Health Record! What happens when providers and patients and families collaborate on the record??? 83

84 OurNotes 1. Participants anticipated patients and families would greatly benefit from contributing to medical notes. 2. The interventions most endorsed were asking patients before visits to write history and goals for visit 3. Patients' contributions to records must not increase clinician workload. 4. OurNotes could impose unaccustomed and unwelcome accountabilities on some patients. 5. Participants had many specific ideas about how OurNotes might work Mafi, Walker, Delbanco, et al. Ann Intern Med. Published online November 14, doi: /m

85 Thanks! 85

86 Thank You from OpenNotes! Liz Amy Cohen, PhD, BCBA, PMP Steve O Neill, LICSW, BCD, JD soneill2@bidmc.harvard.edu #OpenNotes