# 42CFR Listening Session - SAMHSA 20180131 Kim Johnson moderator, w Mitchell Berger Tim Murphy present for initial portion * EMK: balance privacy with parity. She views 42 as discriminatory and continuing stigma. Modernizing 42 will increase access. * KJ: 42CFR 290dd-2 - Congress must change it. 2.20 says to follow the most stringent law (42 vs state law). Before recent update, last updated 30 years ago. * 2014: listening session held []-find * 2017 Final Rule 82 FR 6052: * permitted general consent; emergencies c/w statutory language; research section updated; audit and evaluation; abbreviated notice. * Supplemental NPRM issued Jan 2, comments close Feb 2 * How to change to address pt care, outcomes, pt privacy? * Harsh Trevedi - APA: misaligned with tech; increases stigma; interferes w integrated care by preventing documentation and communication. * drug-drug interactions (DDI) more unreliable due to non-inclusion of SUD rx * depression is just important as DM or CAD... so is addiction * entire states exclude from HIE people w addictions * Rebecca Klein - ABHW & Partnership to Change 42CFR Part 2 (?): stigma; discrimination; poor coordination; safety due to poor communication and coordination; DDI * Jack Rawlings?- Natl Assoc Medicaid Directors: likes audit & evaluation changes. Problems w striking dx and meds. * Eric Goplerud for Renee Popovich: align w HIPAA; need one clear rule to not feel constrained; extra protection for use of records for non-pt care; BAA; methadone needs to be in PDMP, with NO LEGAL ACCESS by law enforcement; binding guidance; need consistent enforcement; delay in guidance has led to open sharing by lawful holders; need stringent court protections (like HIPAA has), incl nondiscrimination/parity. * Tim Murphy: his committee’s investigation found many problems; "what is the essential function of 42CFR?" * requiring separate medical records no longer needed; blocking info in PDMP (eg, methadone, bup) leads to safety issues; safety issues in emergencies; DDI; impact on research and policy development impaired by redacting SUD info (eg, ResDAC); “govt mandated malpractice”, states HHS is not in compliance with the law. * Eric Bailey - Anthem, drug counselor: align w HIPAA; safety problems due to incomplete info; not compliant with parity due to having two sets of privacy rules; Overdose Protection & Safety Act; mentions 42CFR Partnership; barriers to tx, access. * Gerard Sch...? - Orion Health (Health IT): ONC Trusted Exchange permits consents to flow nationwide (eg, C2S - Consent to Share); need to simplify permutations/granularity of consent; different layers of sensitive info; "complexity is too much for HIT developers" [SD: if cars can be driven by computers, surely handling granular consent is not too complex -- the issue is compensation for the development cost] * Danielle Tarino - Addiction Policy Forum * Christine (MN) - hospital EHR firewalls mean can’t share with medical providers; what is ROI language?; do we need to update the lists of consented?; can we take down our firewall now to share info due to the new rule? * Tom Anderson - Frontier BH, Spokane WA - privacy officer: redisclosure requirements prohibit integrated care; they have all pts sign 42CFR ROI in case SUD occurs, but PCPs do not have this redisclosure rule so this conflicts. Redisclosure is their main issue, as it prevents integrated care. * Carolina Austin - Operation PAR Tampa Bay - CJ clients: HIPAA alignment; clients don’t know name of person to disclose to, especially re court cases; pts often have no access to computer; wants 2.31 to change from person's name to role/agency; * woman fr CT: DDI; safety; communication; stigma; * Mark Parino - Pres, AATOD: 1500 OTPs in US have attitudes re how MAT has changed since 1970s? Access to life insurance and disability insurance blocked if have SUD/methadone in history. In OK, law enforcement merges PDMP data with current criminal charges to find people. In another state, police wait outside OTPs and pull over people for DUI. More protections needed to prevent law enforcement use if future 42CFR changes permit broader sharing. * Deborah Reed? - Legal Action Center, atty: Supports 42CFR: maintain 42CFR core protections; HIPAA is not sufficient. 42CFR improves outcomes by people willing to stay in tx. Job, housing, child custody affected negatively if SUD info is known. Use DS4P and C2S. Subregulatory guidance needed. No amendments at this time. * Al Guida - Guide consulting - NetSmart: DS4P & C2S needed. All HIT providers need to modify their tech, train staff, train pts. Outcome: 201711 ONC meeting - SAMHSA said low adoption of this tech. Only 2 HIEs in US accept SUD records. Need rule re sharing btw SUD and PCP. * Teresa Berman - Magellan: barrier to tx; align w HIPAA; providers assume EHR contains complete record; access to complete info needed. * Amy Lahood MD - St Vincent Minneapolis family doctor: got waiver; spent 12 mos working with privacy attorneys, hospitals, etc. EHR lacks ability to segment info, so will need two EHRs, two computers, etc. Prevents integrated care. Stigma, discrimination. Need universal access. Methadone unknown. Safety. DDI. Align with HIPAA. * Kelly Corridor - ASAM: need protection, but today’s needs don’t fit with 40-yr old rules. Integration is necessary. ASAM feels 42 charges sig harm. Align w HIPAA, with protections against use outside HC system. * Wood - Natl Alliance for Med Asst Recovery: no show. * William Stalker? - PA program: He is in recovery; ppl w SUD discriminated against; new changes unwelcome due to expansion of access for payment and HC operation. He must tell pts he has no idea who will see their info. He would not seek tx under these new rules. Mentioned an airline pilot who said would not get tx if no control of info. Protect right to privacy. Should be individual choice, and original intent should be honored. * Eric McDonald - my experience: wall crushed him with permanent pain and disability. In PTSD asst, had a SUD eval without his knowledge or consent. Since it was by a MH provider, not a SUD provider, his records have not been protected under 42. The inaccurate dx of polysubstance use disorder, and release of records to insurance company, have caused him harm, as his info is in MyChart (Epic). Wants to make 42 more effective. * Deborah Kilsey- ACAP? - not AACAP - Medicaid insurance plan company: align w HIPAA. Wants identification of care coordination and care management to be an approved exception. * Amanda Lacann - CTS in CO - works in CJ-involved clients: new rules increase barriers to coord and communication. Unable to specify a specific person. Often there are others involved, esp if person is on leave. Limitation impairs clinical advocacy at the CJ table. Revise to use general release rather than named person. * Monica Scott - ED for Nisha House - small IOP in Baltimore: rules impair work w CJ pts. Can’t TX pts who don’t provide consent. * Jacquline Madison - no show * Eric Goplerud - rep himself: scrap 42CFR and start anew. Law=737 words; regs 13k words. Pres Opioid Commission found 42 to be a barrier, and calls for HHS to align w HIPAA and update 42. Place best parts of 42 into HIPAA. HIPAA is enforced but 42 is not. Part 1 (290-dd(1)) says may NOT discrim agst people w SUD solely bcs of their dx. * Kurt Camly? for self - provider and consumer: need better communication but abuse and discrim does occur. Agrees re rebuilding from scratch. Privacy is foremost. Rural pts won’t seek care if fear info is misused. * Andrew Sperling - NAMI: parity; discrim; safety; quality care; 42 is enormous barrier to integration. Rec to SAMHSA leadership: get Administration to support H.R. 3545 to align HIPAA and 42. * Ken Marks PhD - psychologist - indep contractor: stigma. We don’t put ppl in prison because they have cancer; or remove custody due to diabetes. Need safe environment for good care. New changes to 42 are disruptive. Telling his pts that new rules reduce privacy, which is erodes confidence that future rules may jeopardize thier privacy. Final Rule has gone too far. * Mark Jones - PI of one of first HIEs - MH provider: We are being too parental. His experience is that pts can decide for themselves, and a lot of people want their data shared. His experience is that 95% of their pts want their data shared. Allow pt to make the decision. * Heather Johnson - AK - pt advocate: discrim very much alive. Lady with bike accident to ED, sent out as drug seeking - had broken neck, no imaging. Sister operated on wrong kidney, provider told was drug seeker, denied care. Her husband is Mr McDonald, who has been denied care for CP due to label of “drug-seeker”. * Reliant collaborative, Medford CO * George - Serendipity Alliance, San Antonio TX: stigma; need info integrated into PC. Confidentiality important, but two sets of rules are a barrier.