Many of the nation's hospitals, clinics and physician practices are hard at work developing interoperable electronic health records (EHRs). With the help of a $19 billion infusion of federal funds, they also are involved in the establishment of regional and statewide health information exchanges (HIEs) and regional health information organizations (RHIOs) to share patient data in the hope that improved communication among clinicians can lower costs and improve outcomes. Yet largely due to concern about federal privacy laws, addiction treatment providers-even those using EHRs-so far have mostly been left on the sidelines by the organizations already exchanging patient data.
“Addiction treatment facilities are absolutely being shut out of participating in health information exchange as it is being developed,” says attorney Renée Popovits, whose firm, Popovits and Robinson of Frankfort, Illinois, specializes in representing substance use treatment organizations.
As Popovits explains, the basic problem is that federal confidentiality regulations drafted in the early 1970s, commonly referred to as 42 CFR Part 2, state that without written authorization from the patient, physicians cannot access patients' substance use history and current treatment regimen, except in cases of emergency. The regulations' prohibition on unauthorized re-disclosure is proving to be a thorny issue for policymakers developing consent regulations for nascent RHIOs. Further complicating matters, some state regulations provide conflicting or even more stringent guidelines about protecting sensitive health information.
A November 2008 white paper on consent by the New York eHealth Collaborative notes that “if drug abuse treatment information contained in a summary document were derived from the records of a federally assisted drug treatment program, a specific written consent would be required for re-disclosure. … RHIOs and participating provider organizations will need to consider how the sensitive health information is flagged to ensure compliance with statutory requirements regarding re-disclosure.”
Changing 42 CFR Part 2
Attorney Popovits and Eric Goplerud, PhD, a research professor in the Department of Health Policy at George Washington University, are the driving forces behind a group of attorneys, academics and treatment providers who want Congress to update 42 CFR Part 2 in order to ensure that substance use treatment organizations can participate in HIEs.
While stressing that statutory and regulatory language must continue to protect patient rights and prohibit discrimination, these individuals contend that the sharing of substance use information for specific purposes among entities covered by the Health Insurance Portability and Accountability Act (HIPAA) is necessary to provide effective care. Popovits says that certain provisions of the Genetic Information Nondiscrimination Act of 2008 may provide a working model.
She believes that if addiction treatment remains outside the movement toward sharing health information, it will only perpetuate the stigma associated with the disease. “We should focus on protecting the information from being used in any improper way, such as for employment discrimination,” Popovits says, “but allow it in a very narrowly prescribed set of circumstances for clinical care.”
Progress on some fronts
The necessity of complying with 42 CFR Part 2 hasn't dampened the enthusiasm of all treatment providers about getting involved in an RHIO.
Recovery Net, a collaboration of 11 community-based chemical dependency treatment providers in the Rochester, New York area, is working to develop a shared electronic medical record among the 11 agencies. With a state grant obtained with the help of the Rochester RHIO, Recovery Net expects to complete that project in 2010 and to start accessing data from the RHIO soon thereafter.
“We want to pull down information from the RHIO, such as discharge summaries and prescription information, but we cannot upload anything because of 42 CFR Part 2,” explains Carl Hatch-Feir, vice president for administration at the Loyola Recovery Foundation, one of Recovery Net's members.
“The one-way data we will get from the Rochester RHIO will be enormously helpful,” Hatch-Feir says. “We can learn who else is prescribing for these patients and what they are prescribing. Are those prescriptions being filled? What else are they being treated for? There's a real potential for improved quality of care, even if the information flows only one way for now. We will take our half a loaf.”
The idea of sharing substance use information clearly makes people in the healthcare community nervous. Representatives of some HIEs that list addiction treatment centers among their stakeholders did not want to be interviewed for this article; it appears that few necessarily want to be seen as being ahead of the curve in this sensitive area.
Yet the belief that federal regulations are blocking substance use treatment organizations from participating in HIEs is not universal. Some providers and HIEs are studying the issue and their own state's regulations closely, and others believe the federal government needs to clarify the language of the regulation as it relates to HIEs.
CareSpark, a health information exchange covering parts of rural Virginia and Tennessee, is working on consent issues in both states with an eye toward adding a limited set of addiction treatment and mental health data to its exchange.
“Our behavioral health and addiction treatment communities are committed to the concept that not all, but certain information should be available to providers, including a list of medications, a diagnosis, a treating clinician and a point of contact, which may be a caseworker or counselor,” says Liesa Jenkins, CareSpark's executive director.