Summary/Abstract

Proposal to Ease Limits on Treatment Disclosure Has Privacy Groups Concerned

Federal officials are proposing to ease 40-year-old restrictions on the release of information about patients' drug- and alcohol-abuse treatment, so their electronic medical records can be more easily used and shared.

Federal law has long protected substance-abuse-treatment records from being disclosed to anyone without a patient's explicit consent, so that fear of stigma or discrimination wouldn't deter those in need from seeking help. If a patient agrees to share substance-abuse records with, say, a doctor or hospital, those records can't be sent anywhere else unless the patient consents again.

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Officials at the Substance Abuse and Mental Health Services Administration, known as Samhsa, say those rules didn't envision today's highly integrated health-care systems that rely on the broad sharing of patients' detailed electronic medical records to coordinate care. The Obama administration is paying doctors and hospitals $36 billion in incentives to move to such systems, which proponents say can reduce medical errors and duplication and cut costs.

Many of those coordinated-care systems are finding the consent rules unworkable, Samhsa says, particularly the state and regional hubs that transfer such patient records among health-care providers, known as Health Information Exchanges. Many HIEs are excluding drug and alcohol information rather than seek repeated patient consent each time a record is shared down the line, the agency says.

Only Congress can change the law itself, but Samhsa is considering revising regulations that define consent. One option is to ask patients to broadly agree that their substance-abuse records can be shared with a HIE and any provider the patient sees. "Right now, even if a patient wants to do that, HIEs don't have a way to comply," says Maureen Boyle, lead public-health adviser at Samhsa. Patients could still opt to not share their records at all, she says.

The consent requirement applies to programs that specifically provide substance-abuse treatment and receive federal funds—about 14,000 nationwide. Records of treatment in other settings, and information that patients tell doctors themselves, are subject only to the Health Insurance Portability and Accountability Act. Hipaa protects medical records from public disclosures but has exemptions that let doctors, insurers and certain others view patient records without requiring consent.

Samhsa has scheduled a "listening session" on June 11 to gather public input before deciding how to proceed.

Some addiction specialists, physicians and public-policy advocates have long argued that substance-abuse and mental-health information should be integrated with patients' general records. "I've heard of many cases were doctors were unaware that a patient was being treated for addiction and prescribed medications or anesthesia that put them at serious risk," says Eric Goplerud, who directs substance-abuse studies at the University of Chicago's NORC research center.

But privacy advocates worry that the wider information is shared in the health-care system, the greater the risk of public disclosure. "If we lose this, people will stop getting treatment," says psychiatrist Deborah Peel, founder of the nonprofit Patient Privacy Rights Foundation.

Despite antidiscrimination laws, many people in treatment still fear that exposure of their drug or alcohol problems could jeopardize their careers or their ability to get life insurance or retain child custody, addiction and legal experts say.

Other addiction experts agree that better communication with the medical system is needed, but they are concerned that patients could lose control of sensitive information under the proposed change.

"Most of us agree that what is medically necessary should be readily accessible to those medical professionals," says Michael Walsh, CEO of the National Association of Addiction Treatment Providers. "But I don't necessarily think my ophthalmologist needs to know about my addiction and recovery unless it's relevant to treating my eyes."

Technology that can mask selected parts of electronic records—known as data segmentation—is still in its infancy.

As of now, when a patient consents, substance-abuse treatment centers typically transfer the records via fax or regular mail, with information patients don't want released blocked out manually.

The Department of Health and Human Services has been testing software that can transfer records electronically while honoring consent rules. But Deven McGraw, an attorney who chairs the committee overseeing the pilot projects, says most electronic-medical-record systems can't recognize which data are subject to special protections and often link to outside systems, so the risk of redisclosure is high.