Substance abuse data suppression: safeguarding privacy or hindering research?

In the United States, the use of drugs like cocaine is down, but a more socially accepted but no less dangerous type of substance abuse is persistent and widespread. It has been reported that opioids are the leading cause of drug deaths in the United States. Prescription drug abuse has become such a problem throughout the country that the Centers for Disease Control and Prevention (CDC) has stated that prescription drug overdose is an epidemic. The White House website even has a section devoted to combating prescription drug abuse. Despite the fact that the United States seems awash with substance abuse problems, the New York Times is reporting that researchers who would like to study the association between drug users and the illnesses that disproportionately affect them are thwarted because of a CMS policy that has been limiting their access to records vital to research.

In December of 2014, researchers were shocked to discover that during the prior year, HHS CMS had begun to redact Medicare records that contained any claim codes related to substances abuse diagnoses. In 2014, CMS began to do the same to Medicaid records. CMS justifies the redaction of any Medicare or Medicaid files containing substance abuse codes by citing to the confidentiality of drug and alcohol abuse patient records regulations (42 C.F.R. Sec. 2). According to CMS, “when researchers need access to more detailed claims information than that which is included in limited data set files or public use files, there is a risk that the data could be used to identify a patient receiving treatment for alcohol or drug abuse. Therefore, to ensure compliance with [Substance Abuse and Mental Health Services Administration (SAMHSA)] regulations, after gathering requested data for a researcher, CMS redacts any substance abuse related claims from the resulting research identifiable files based on codes within the claims. CMS implemented this in November 2013 for Medicare claims and March 2014 for Medicaid claims.” The records redactions impacted 7 to 8 percent of all inpatient hospital records and an estimated 4.5 percent of inpatient Medicare claims and about 8 percent of inpatient Medicaid claims.

According to a recent article in the New England Journal of Medicine, the suppression of the data has not only had a chilling effect on researcher’s work, but could also negatively impacted health care reform and the work of accountable care organizations (ACOs)and health information exchanges because the consent requirements make patient data sharing related to substance abuse problems nearly impossible. As a result, substance abuse information is removed from the records, which undermines the ability of the health care providers to improve both case and efficiency. Also, the suppression of the data may extend from its intended target because many of the withheld data relate to not to substance disorder admissions, but conditions that are made worse by substance abuse. Additionally, some have argued that the suppression of data also limits health care providers’ ability to care for patients because doctor’s offices and hospitals cannot share data on substance abuse. Therefore, a doctor may be unknowingly prescribing pain killers to an individual with a diagnosed painkiller addiction, but would have no way of knowing it due to the limitation on data. This may true even if the doctor is working with another to coordinate the patient’s care.

There may be a glimmer of hope for researchers as Politico is reporting that the suppression of data may soon be coming to an end as health officials are planning a Proposed rule that would grant researchers access to substance abuse data. Pam Hyde, Administrator for SAMHSA, reportedly stated that it is trying to grant researchers access to the data without having to wait for Congress to act to change the law: “We are having to work with the law and the regs and the lawyers about what it takes to get that and still be in line with the way the law is currently written,” she said. However, some have cautioned that excitement may be premature, as the proposed rule could be stalled at any point during the lengthy rule-making process.