WIXLIB

Opening Notes Directly to TransplantPatients Under the Cures Act:Applying Lessons LearnedSteve O’Neill, LICSW, BCD, JDSocial Work Manager, OpenNotes ProgramBeth Israel Deaconess Medical CenterTeaching Faculty, Center for BioethicsInstructor in Social MedicineHarvard Medical SchoolProfessor, Research AffiliateSimmons University School of Social WorkSociety for Transplant Social Workers ConferenceOctober, 2021

No Conflicts .to report Funding sources: Cambia Health Foundation,Gordon and Betty Moore Foundation, PetersonCenter on Healthcare, Robert Wood JohnsonFoundation2

OpenNotes What is OpenNotes? What is OurNotes?3

Goals Share our own, as well as the nationalexperience, with fully open clinical notes,particularly in mental health Notes as (narrative) therapy forbehavioral health and mental illness OpenNotes as a movement to create aculture of transparency and respect,especially in establishing partnershipswith the patients we serve!4

Always start with .What is Best for the Patient?!!5

Relevant BIDMC History Ethics Note Sharing Policy (20 years) Sharing Notes in Mental Health (35 years) Culture of Transparency and Trust-Apology and Disclosure-Preventable Harm Initiative6

21st Century Cures Act Effective April, 2021! Requires Direct Patient Access to their Electronic MedicalRecord, really OpenNotes! Forbids “Information Blocking”! Mental Health (“Psychotherapy Notes”) had been viewed asexcluded but really appears to be included . Complete record access through third party apps to beprovided by 10/22! Prior to Cures Act, 55 million patients in USA participating inOpenNotes with 25% having opened up mental health notesfor 3 years7

21st Century Cures ActAchieving Information EquityHIPAA catching up with the computer agePatient Autonomy (Undue?)PaternalismProfessional Autonomy and Integrity8

We miss a critical opportunity tobuild trust and advance equity! Trust is essential for: Following care plans and other clinical advice Getting recommended vaccinations (!) Clinical trials (!) Telehealth (!) And establishing any relationship!!

Federal “Preventing HarmException”(See 45 CFR § 171.201) There are 4 scenarios in which a provider may blockinformation under the “Preventing Harm Exception”. Under each of these 4 scenarios: The provider must reasonably believe that blockingaccess to information will substantially reduce the riskof harm to the patient or another person. Blocking access to information should be no broaderthan necessary to substantially reduce the risk of harm.

Information Blocking Groups/Classes of Persons Issue If “covered actor” with electronic health information,then the Rule requires you to make it available

Federal Exceptions(See 45 CFR § 171.201) Content and Manner Exceptions Substantial Harm Physical Harm Privacy Exception

Federal Exceptions(See 45 CFR § 171.201)Do Social Work Transplant Evaluations fall under theexceptions for ‘blocking’?And is there a difference if the transplant is ‘life saving’vs ‘life enhancing’?

Social Work Transplant Evaluations Ethical Considerations: ve Justice

Social Work Transplant EvaluationsYour professional obligations:To the patient? Their loved ones? Your clinical team?To the organ donor?

Social Work Transplant Evaluations

Three Principal Questions Would OpenNotes help patientsbecome more engaged in their care? Would OpenNotes be the strawthat breaks the clinician’s back? After 1 year, would patients and clinicianswant to continue?17

Behavioral Health Roll Out1. BIDMC Psychiatry Department- 3/1/14 startOpt-in Model: 10 patients apiece2. BIDMC Social Work Department- 4/1/14 starta.) Opt-out Model: All patients inunless specifically excluded orb.) Ramp-up Model: Start with smallercohort and build up18

Staff 15 Psychiatrists/Therapists In Psychiatry Department 28 Social Work Therapists agreed to pilot; 4 declined;pediatric therapists and fellows excluded; staff turnover; or no eligible patients 24 started 440 patients at start; Currently better than 5000participating in open therapy notes and includes all19

Common Concerns aboutOpen Notes in MentalHealth:

OpenNotescauses harm!!

BIDMC Clinical Staff Fears:1. Increased Work Burden—”feeling a sense of pressureto get notes entered in a timely manner so that they canbe useful to the patient”22

BIDMC Social Work Staff Fears1. Increased Work Burden—”feeling a sense of pressureto get notes entered in a timely manner so that they canbe useful to the patient”2. Misunderstanding: “I’m concerned about patientsmisunderstanding information in the notes .”23

BIDMC Social Work Staff Fears1. Increased Work Burden—”feeling a sense of pressureto get notes entered in a timely manner so that they canbe useful to the patient”2. Misunderstanding: “I’m concerned about patientsmisunderstanding information in the notes On theother hand, I am hopeful that the open notes mayactually enhance the therapy process and promotegreater communication/understanding on both sides.”24

BIDMC Social Work Staff Fears3.Re-languaging Notes and Processing of Notes-“ .will they be angry about certain content?!”25

We will have to changeour notes, possibly doublechart, and importantinformation will be lost!

BIDMC Therapist Fears4. Patients with severe mental illness, especiallypsychosis and paranoia will flee5. “It’s one thing to tell them in session we thinkthey are having paranoid thoughts and anotherfor them to read it at home alone”27

Therapist Work Group: FAQ’s and scripts/info sheets developed Anticipating reactions or feedback from patients andcolleagues and staff Thesaurus approach for altering language28

What did wefind .?29

Patients were pleased And they .- want their notes!- are not scared stiff!- read the notes!- share the notes!- report important benefits!30(Delbanco, Walker, et al, Ann Intern Med, 2012)

Patients were pleased Patients with ‘adverse effects’ tended to clarifythese concerns as underlying concerns such asprivacy or already existing issues; ormisinterpreted questions when asked Biggest issue, as in medicine, seems to bewhether there is concordance between what thetherapist says in session and what they write inthe note31(Delbanco, Walker, et al, Ann Intern Med, 2012)

Note Reading The vast majority of patients never mentioned to theirtherapist about having read their notes Note Reading drops off due toredundancy .32

Privacy vs Confidentiality18% shared notes with others (2042% in medicine), mostly family33

The NIGHTMARE Patient!!Recurrent staff concerns about the “nightmarepatient” reported at BIDMC, as well as otherpractices .34

The NIGHTMARE Patient!!Is this really an index for ‘contagious’staff angst?These are labor intensive patientsirrespective of the therapeuticinterventions .!35

Patient who Regresses Reads her notes and increasingly paranoid Group therapy36

Less Than Honest Transplant Patient Ethics Consultation: Living situation not accurate Ability to get to/from appointments not accurate37

38

Transplantation Cases:1. John is severely injured through an explosion. Hesuffers severe mutilations to his body andstruggles with Post-Traumatic Stress Disorder.John is in his late 20’s.2. Jane had a history of serious illness with cervicalcancer. She also suffered an eye injury from anexplosion. Jane is in her late 20’s.3. Kevin is 7 years old and has severe disfiguringinjuries, especially to his face, as well as manyadjustment issues.39

Transplantation Cases:1. John would like to be considered for an armtransplantation as well as a penile transplantation.2. Jane would like to be considered for a whole eyetransplant as well as uterine transplantation.3. Kevin’s parents would like him to be consideredfor a facial transplantation40

The Trolley Problem:41

The Trolley Problem, Part 2:42

The Trolley Problem, Part 2:43

Why The Difference?J. Greene, R. Brian Somerville et al“An fMRI Investigation of Emotional Engagement inMoral Judgment”” Science, Vol 293, 2105-2108, 200144

The Trolley Problem Why the Difference? An internet-based survey of the dilemmas was presented to a wide variety of people .Over 200,000 peopleOver 120 countriesIdentical results regardless of gender, countries, educational levels,ages, income levels, political affiliation, religious affiliationResults:90% throw the switch10% push the very large personCan’t explain why Rational explanations insufficientPoints to a universal human principle about moral reasoning?45

Distributive Justice IssuesOrgan Scarcity Precious Gift!46

Transplant Cases:John’s injuries from the explosion were from anImprovised Explosive Devise (IED) in Afghanistanwhile he was serving his country in the militaryVerses 47

Transplant Cases & The Rule of RescueJohn’s injuries were from his Meth Lab explodingwhich he and his wife Jane were operating as part oftheir drug dealing efforts.And what if Jane’s uterine trauma was due to themeth lab explosion instead of from cervical cancer?And what if Kevin is their son who was caught in theblast! Or Kevin is an undocumented person, as arehis parents?48

Open Notes .How will you document?Can/should you block the note?Does it meet criteria for blocking?49

“Self-Inflicted” Health IssuesCreate a very differentresponse .to scarceresource allocation issues50

51

Life Saving TransplantsSickest plus SurvivabilityLoyalty to Recipient and to DonorOrgan as a Gift to be Treasured52

Two Patients who Prints Out Notes Unable to recall what was talked about in session One prints out note to review regularly Other declines looking at note for some time53

Delusional Patient Couple’s Therapy Belief that smoke/carbon detectors are bugged54

Patient Struggling with Depression “Declined” reading notes for 2 ½ years “I’d be petrified to look. I’m not gonna do it.” Convinced notes will affirm his being a “horrible”person55

Looking Under the Hood56

The Bottom Line Better than 80% of patients wanted to continue tobe able to see their visit notes online. Better than 60% of patients said availability ofopen notes would affect their futurechoice of a therapist. Not one therapist or patient asked to stop And now .57

Patients with Severe Mental IllnessStudy (Blease et al, 3/21, JAMA)-136,815 patients with Bipolar D/O, Schizophrenia orMajor Depression; 29,656 responded (22%)-67% reported being helped to understand why theirmed(s) were prescribed-65% reported feeling more comfortable with takingtheir med(s)-60% reported feeling that reading their note(s) helpedto answer their questions

Lessons Learned 70/30 Rule Delivery of Difficult News 70 % withsolid metastatic cancer unaware ofchemo’s palliative intentWeeks et al., “Patients’ Expectations about Effects of Chemotherapy forAdvanced Cancer,” NEJM 201259

Lessons Learned 70/30 Rule Stigma, especially in mental health!Mainstream!!60

Lessons Learned 70/30 Rule Stigma, especially in mental health!Mainstream!! Professionals Fears: looking foolish orincompetent Active vs. Passive Utilizers!61

Transparency, Trust, Respectand RelationshipsTransparencyHonesty s Adherence AcceptanceTrust

Privacy vs Confidentiality18% shared notes with others (2042% in medicine), mostly family63

TrustWhat is Best for Our Patients?!64

PragmaticConsiderations65

How Can Sharing BehavioralHealth Notes Help Patients? Demonstrating respect and reducing stigmaEmpowering patientsOrganizing care and tracking progressProviding a tool for behavior changeEnhancing trust and the therapeutic relationshipMaking care saferPotential for reducing workloadSource: h-care-providers/mental-health/66

Writing Open Notes Tips First and foremost .Always write your note as if the patient is looking overyour shoulder!!!Avoid ‘surprises’67

Writing Open Notes Tips: The invitation is important Promote transparency Use plain, and supportive, language Engage patients in the documentationprocess, especially with ‘sensitive’ info Develop options if a patient’s access tonotes may carry more risk than benefit Discuss the diagnosisSource: h-care-providers/mental-health/68