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A new proposal to amend a landmark federal privacy law is butting up against resistance from recovery advocates and others, as the addiction treatment and recovery community struggles to strike a balance between the need for integration with mainstream medicine and privacy concerns about the use of electronic medical records.
Under the federal Confidentiality of Alcohol and Drug Abuse Patient Records Act, enacted in 1972, healthcare professionals are barred from accessing records pertaining to individuals' alcohol and other drug treatment without written authorization, except in emergency situations. Designed to protect people with addictions from stigma and discrimination, the law can sometimes inhibit effective service delivery, such as case management and use of screening and brief intervention programs, some health professionals say.
On Feb. 5, a group calling itself the Patient Protection Coalition released a draft proposal (PDF) that would amend the federal law to allow “very limited disclosures of information about substance-use disorder treatment to healtcare providers and health plans for purposes of treatment, coordination of care, recovery support, quality improvement, disease management and payment.”
The proposal would “carve out an exception to the statute that would allow healthcare providers to access a minimal amount of data without getting explicit permission,” said Eric Goplerud, Ph.D., head of the Center for Integrated Behavioral Health Policy at the George Washington University Medical Center, who is facilitating and disseminating the coalition's work.
Plan: More Access, Tougher Penalties
Specifically, the proposed amendment to the statute (42 USC 290dd-2) would allow healthcare providers to access demographic information, diagnosis, medications, laboratory results, and identification of past or current treatment providers.
At the same time, the draft statute would explicitly prohibit discrimination on the basis of information in substance-use disorder program records; limit use of patient information in criminal and civil investigations or proceedings; strengthen civil and criminal sanctions against unauthorized disclosures; and give individuals the right to pursue civil remedies against anyone who violates the statute, according to the coalition, led by Richard J. Bonnie, director of the Institute of Law, Psychiatry and Public Policy at the University of Virginia School of Law.
Goplerud noted that the current statute calls for only a $500 fine for those who violate patient privacy, compared to the $1.5 million fines that can be imposed on those who violate the privacy protections of the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
“The proposal couples a modest, but necessary, liberalization of treatment-related disclosure with several major amendments designed to strengthen the Act's sanctions and remedies for breaches of confidentiality,” the document states.
“Nobody wants to do anything to compromise the basic objectives of the 1972 law, but we do want to see it strengthened,” Bonnie told Join Together.
The coalition “did a very serious piece of work that would simultaneously allow core information about an addiction diagnosis and medication to be included in a medical record that can be seen by other treating personnel, and adds new confidentiality protection for addiction-related information to cover circumstances that did not exist when the current rules were drafted decades ago,” said David Rosenbloom, Ph.D., director of Join Together.
For example, many people with addiction problems are unprotected by the 1972 law because its privacy rules apply only to treatment in specialty addiction programs, whereas services are increasingly being delivered in other medical settings, where only the weaker HIPAA rules apply.
Goals Endorsed, Methods Not
The proposal was unveiled to the treatment and recovery community during a Feb. 10 conference call that drew 49 participants despite a raging snowstorm bearing down on Washington, D.C., and the rest of the East Coast. Goplerud warned that if addiction treatment information continue to be excluded from electronic medical records, “it will fundamentally cripple the integration of addiction treatment” into the mainstream healthcare system and healthcare reform.
However, it quickly became apparent that consensus remains a distant goal. Rosenbloom, who took part in the conference call, said that some participants related examples of healthcare providers and judges abusing their access to treatment records to take punitive action against patients. Others described circumstances where patient care suffered because the treating physicians did not have access to information about the patients' addiction diagnosis and medications, Rosenbloom said.
Groups like Faces and Voices of Recovery, the Legal Action Center (LAC), and the National Association of State Alcohol and Drug Abuse Directors (NASADAD) declined to endorse the changes proposed by the coalition. Instead, each issued statements that generally supported the current law even as they acknowledged that electronic health records would improve patient care.
“From our experience it is clear that communication can be enhanced without compromising confidentiality or changing the basic framework of the federal alcohol and drug confidentiality law and regulations — and that the advent of electronic health record systems can make achieving these twin goals easier, not harder,” said the LAC in a 10-page paper on records confidentiality released in January.
The LAC paper states that the current federal laws “are not a major barrier” to integrating addiction services with the rest of the healthcare system, and that the goal of improving health communication should focus on tweaking the federal government's interpretation of the existing law. “Amending the underlying statute would create great -– and we strongly believe unacceptable -– risk that bedrock protections could be eviscerated during the legislative process,” LAC said.
“The current privacy protections address the real threat of discrimination that people seeking help for alcohol and other drug problems face, including the inability to obtain life and other insurance; eviction from public housing; loss of child custody; loss of employment; arrest and prosecution,” added Faces and Voices of Recovery in a Feb. 11 statement. “Current privacy protections should not be viewed as a barrier to integrating care for addiction with the rest of the healthcare system.”
LAC said that the existing federal laws “strike a reasonable balance” between access and protection, especially when compared to HIPAA, which was intended to protect the privacy of electronic health information but “which allows virtually unfettered disclosure of alcohol and drug patient records without individual patient consent to the full range of individuals and organizations involved in law enforcement, health care payment, and health care operations, and allows those entities to redisclose those records without restriction,” the group said.
A Call for More Discussion
Bonnie said he was pleased that the Patient Protection Coalition's proposal had provided a jump-start to what he called a much-needed debate. “We know these are very sensitive issues,” he said. “The process of consensus-building takes detailed discussion … There is common ground here and there should be a way to work it out. This is a start.”
Mike Morris, a coalition member and president and CEO of Anasazi Software, Inc., said there are multiple challenges to integrating the 1972 privacy rules, as currently written, into electronic patient records: the rules are specific to delivery setting, for example, and require a reauthorization of disclosure every time information changes hands. “It's not impossible, but programmers need clarity on how it would be done,” said Morris.
“The view of our group has been that what needs to be done cannot be done without statutory change,” said Bonnie. “If others say we can get it done through the regulatory process, I have an open mind.”
LAC, NASADAD and Faces and Voices called for a “deliberative process” — preferably led by the Substance Abuse and Mental Health Services Administration — that would bring together recovery advocates, treatment providers, legal and technology experts, and others to “develop recommendations for the promotion of efficient and clear communication between all health care systems without jeopardizing the underlying statue that is the backbone of privacy rights for individuals seeking and sustaining their recovery from addiction.”
Coalition members noted, however, that draft regulations for the behavioral-health components of national electronic medical-records standards are already being circulated, and that an extended deliberative process could mean that the field will miss its opportunity to weigh in on the proposed changes. “There is a reason to put this on the front burner rather than the back burner,” said Bonnie. “The healthcare system is in tremendous flux and transition, which is why there is a greater urgency.”