For “integrated care” to work – whether we’re talking about integrated service delivery or about integrated care management of accountable care organizations (ACOs) or medical homes – the most important element is the seamless integration of data. At least, this is the most important element for specialist organizations that want to remain independent and “collaborate” with primary care organizations.
Much of our recent focus has been on making the technology and the technology vendors work – but there is slow progress on interoperability (see Can APIs Solve Our ‘EHR Problem’? and In EHRs, Does Broader Or Bigger Or Smaller Make A Difference?). This includes concerns about the technology vendors themselves creating artificial impediments to interoperability – see Are EHR Vendors Holding Patient Data Hostage? and Medical Records Held Hostage – From Consumers.
But, there is one more issue in need of solution – the exclusion of addiction treatment data from routine data exchange models that support integrated care. What is this? In case you missed the issue, Title 42 of the Code of Federal Regulations, Part 2 (see Code of Federal Regulations, Title 42: Public Health), prohibits many forms of disclosure and use of patient records pertaining to addiction treatment (see ‘Prohibited Disclosure’ – Behavioral Health Locked Out Of HIEs). This is an issue that is likely to create an insurmountable strategic challenge for stand-alone addiction treatment provider organizations. The logic for limiting the exchange of this data is based on privacy – and I’m not minimizing the need for protection of consumer health information. This is essential for all consumer health information. (And, for more, see Applying the Substance Abuse Confidentiality Regulations to Health Information Exchange (HIE) (PDF | 381 KB) and Confidentiality of Patient Records for Alcohol and Other Drug Treatment Technical Assistance Publication).
The limits on integrating data about addiction treatment into the “shared” consumer health record is proving to be an obstacle for research. Citing these privacy concerns, the Centers for Medicare & Medicaid Services (CMS) began in 2013 to withhold data sets that included any Medicare or Medicaid claim with a substance use disorder diagnosis or related procedure code – in effect withholding information about 4.5% of inpatient Medicare claims and about 8% of inpatient Medicaid claims, according to a recent article in The New England Journal of Medicine (see Protection or Harm? Suppressing Substance-Use Data). The authors note:
The affected data sources include Medicare and Medicaid Research Identifiable Files, which contain beneficiary ZIP Codes, dates of birth and death, and in some cases Social Security numbers. For tasks common to most health services research — such as combining patient-level data across systems (e.g., Medicare, Medicaid, and the Veterans Health Administration [VHA]), associating them with community or market factors (e.g., provider density or type of health insurance plans available), or studying mortality as an outcome — these are essential variables.
But the greater impact is the effect of this situation on new integrated care management models like ACOs and medical homes. Many consumers with addictive disorders fall in the “high utilizer” category – and are the focus of emerging coordinated care management models. With these limitations on sharing data about addiction treatment, independent behavioral health provider organizations will find themselves “locked out” of these emerging systems for good reason. Executives of primary care-focused organizations will find it simpler to provide their own addiction treatment services – and capture the data in their own electronic health records (EHRs) – than try to work around this legacy rule.
What is happening to address this issue? Last June, the Substance Abuse and Mental Health Services Administration (SAMHSA) made moves to change this – and to facilitate greater HIE throughout the industry – with a public listening session (see Confidentiality Of Alcohol And Drug Abuse Patient Records). SAMHSA promised a new proposed rule that might: redefine the records covered under Title 42, Part 2; change patient consent requirements; change re-disclosure requirements; redefine “Qualified Service Organization” to explicitly include the provision of care coordination services; and give researchers greater access to the data they aren’t currently allowed to access (see SAMHSA Mulls Changes To Federal Substance Abuse Confidentiality Rules). But I haven’t seen much movement since then.
I think this is a sleeping strategic issue for specialist behavioral health organizations – and hope this will get the attention of advocacy organizations. For more, don’t miss the October 27 session, How Can We Improve Behavioral Health Data Exchange? The Challenges & The Opportunities Of HIE, at the 2015 OPEN MINDS Technology & Informatics Institute.