The OpenNotes Patient and Family Reporting Tool: Engaging Patients and Families as Partners in Safety and Quality Technologies to Engage Consumers in Information Management S04 Fabienne Bourgeois MD, MPH Boston Children’s Hospital Twitter: #AMIA2017

Disclosure I and my spouse/partner have no relevant relationships with commercial interests to disclose. Funding: CRICO Quality Grant AMIA 2017 | amia.org

Learning Objectives After participating in this session the learner should be better able to: Understand the benefits of allowing patients and families to provide feedback on visit notes Understand the types of safety concerns most frequently identified by patients and families in visit notes Understand the impact of patient/family feedback on prompting updates to the medical record or care AMIA 2017 | amia.org

Background OpenNotes Initiative Launched in 2010 Leverage patient portals to provide online access to visit notes Increasing push toward transparency Empower patients and families to engage in their care by reviewing visit notes Goal of 50 million Americans with access to visit notes by 2018 Currently ~19 million patients with access nationwide AMIA 2017 | amia.org

Background How does access to notes impact care? Delbanco, T et al. Ann Intern Med. 2012 3 Open Notes sites (MA, PA and WA) 82% of patients opened at least 1 note (84% at BIDMC, 82% at GHS, and 47% at HMC). 77% to 87% reported feeling more in control of their care 60% to 78% of those taking medications reported increased medication adherence 1% to 8% reported that the notes caused confusion, worry, or offense 99% of patients wanted open notes to continue and no doctor elected to stop AMIA 2017 | amia.org

Background Can patients and families help improve the accuracy and quality of visit notes? Difficult to identify and quantify ambulatory safety events Few processes to recognize documentation errors Invite patients and families to identify inaccuracies in notes AMIA 2017 | amia.org

Background Bell SK, et al. BMJ Qual Saf 2016 6225 adult patients seen at 2 primary care practices Invited to provide feedback on their online notes Survey link at the bottom of the notes 260 reports submitted by patients Reviewed by Patient Relations Team 23% reported a potential safety concern Inaccuracies in the note or inability to understand the care plan 64% of reports found to be a definite or possible safety concern 57% of concerns resulted in a change to the medical record or care 99% of the patients found the tool valuable Improved or no change in patient-provider relationship AMIA 2017 | amia.org

Objective To quantify and characterize patient and parent reports of potential documentation inaccuracies and safety concerns among ambulatory primary care and subspecialty visit notes available through online patient portals at 2 urban academic hospitals AMIA 2017 | amia.org

Study Design Design: Setting Prospective cohort quality improvement initiative Setting 2 Urban academic hospitals: Adult medical center (Beth Israel Deaconess Medical Center) Children’s medical center (Boston Children’s Hospital) AMIA 2017 | amia.org

Study Design Participants BIDMC BCH Adult patients with active patient portal accounts and Eligible ambulatory visit note (starting 8/2014) 2 primary care practices and OG/GYN practices BCH Parents/legal guardians and patients ≥13 years of age with Active patient portal accounts and Eligible ambulatory visit note (starting 6/2016) Primary care and Subspecialty clinic notes Except: Confidential ambulatory clinic notes High risk clinics: Adolescent, Gynecology, Adolescent Substance Abuse Program, Child Protection Team, Psychiatry Parents of minor children and legal guardians of adult patients Higher risk of managing confidential information and notes are defaulted to confidential AMIA 2017 | amia.org

Intervention Reporting Tool Co-developed with members of the Patient and Family Advisory Committee 10 item online survey: How well did the note describe the visit How well did the respondent understand the care plan Were there any inaccuracies in the note Was there any language that the respondent found bothersome Voluntary positive feedback for the provider Reports followed a QI algorithm Reviewed and managed in real-time by Patient Relations representatives AMIA 2017 | amia.org

Outcomes Potential Safety Event “No” response to the query related to understanding or following the care plan “Yes” or “Unsure” response to the query related to finding a possible inaccuracy Safety Concerns were reviewed by Patient Relations Coded based on outcomes Amendment made to medical record or care Amendment declined by provider Referred to patient relations Intervention declined by patient AMIA 2017 | amia.org

Results 1145 Reporting tool surveys submitted BIDMC : 741 surveys 22% reported possible inaccuracies 7% reported challenges with the care plan 7% reported bothersome language 72% provided positive feedback BCH: 404 surveys 36% reported possible inaccuracies 9% reported challenges with the care plan 8% reported bothersome language 42% provided positive feedback 94% complete by parents, 6 % by patients AMIA 2017 | amia.org

Results Types of Inaccuracies BCH N=217 % BIDMC N=247 Medications 9.6 16.6 Description of Chief Complaint 11 14.2 Problem List 14.7 Social History 2.3 4 Family History 8.3 7.3 Description of Physical Exam 6 Other Missing Information 10.6 13.8 Names of Healthcare Providers 0.8 Appointment Scheduling 2.8 0.4 Other 27.2 19 AMIA 2017 | amia.org

Results Safety Concern Outcome BCH N=87 N (%) BIDMC N=99 Amendment Made to Medical Record or Care 55 (63) 77 (79) Amendment to Medical Record Declined 8 (9) 3 (3) Deferred to Patient Relations 5 (6) 15 (15) Intervention Declined by Patient  8 (9) 3 (3)  No Response 13 (15) 1 (1) 22% of reports with safety concern : BCH 13% with safety concern BIDMC AMIA 2017 | amia.org

Feedback for Providers “Dr. Y was great.  My first visit with her: I felt as though she listened thoroughly and treated me with great respect.” “AMAZING appt. The ease of testing was greatly in part to the attention and entertainment from the doctors. Your confidence and knowledge is obvious-it left us feeling confident and concrete on our dx and decisions for future care. You all were meant to work with children--we are grateful we found you!” “Dr Z communicates in a way that is caring and informative and motivating.” “Dr […] was so thorough during the exam and took in so much information regarding my daughter's health issues. She was superb.” AMIA 2017 | amia.org

Feedback about Notes “I love this feature of being able to view the note! It perfectly summarized the visit and was nice to be able to reference and share with my husband who wasn't able to make the appointment. I appreciate Dr […] taking the time to write such a detailed update.” “We are so grateful to have the notes to review of [Patient’s] apts It is overwhelming as a parent to absorb all of the information at the time of the visit so the notes are very helpful to review.” “We are so grateful to have the notes to review of [Patient’s] apts It is overwhelming as a parent to absorb all of the information at the time of the visit so the notes are very helpful to review.” AMIA 2017 | amia.org

Conclusions Patients and Parents provide important feedback on documentation inaccuracy Few patients or parents were bothered by language in the notes Patients and Parents provided positive feedback regardless of reported inaccuracies Patients and Parents are important partners in improving the quality and safety of ambulatory care AMIA 2017 | amia.org

Project Teams BIDMC: Sigall Bell Tom Delbanco Jan Walker Alan Fossa Macda Gerard Patricia Folcarelli BCH: Marvin Harper Dan Nigrin Dianne Arnold Monique Mello Jenny Sadler Irene Chen Elizabeth Bennett Amanda Martino AMIA 2017 | amia.org

Thank you! fabienne.bourgeois@childrens.harvard.edu