In 2013, the Department of Health and Human Services abruptly removed researchers' access to data on Medicare and Medicaid patients. The newly restricted data was specifically related to patients with substance abuse problems. This recent restriction on data has many researchers worried their future efforts to study substance abuse disorders will be seriously limited.
They say the data restrictions are standing in the way of their efforts to complete research in an effort to better understand substance abuse and improve care for all patients. The Department of Health and Human Services say they made the change because of concerns expressed by patients over their privacy.
It is understandable that patients undergoing treatment for substance abuse would want access to their information to be limited. Having a drug or alcohol problem certainly carries a stigma. Patients were concerned that their information could be used against them, for example, to put them in jail, cause them to lose custody of children, or keep potential employers from hiring them. Nevertheless, the new restrictions on their data has created some serious obstacles to research and the future of substance abuse treatment.
Already between 7 to 8 percent of hospital records have been withheld from researchers That's almost 1 million records for patients receiving Medicare or Medicaid. There are also records on outpatient care and at-home care that are no longer available to researchers.
Addiction specialists need these records to improve their research methods and to get more accurate results that could then be used to improve substance abuse treatment methods for all patients. Records from Medicare or Medicaid patients are often used by researchers because they have historically been easier and much cheaper to obtain than records from private insurance companies.
Medicaid and Medicare records have been the go-to method for researchers to analyze health care use, costs, and determine how effective treatments are. For decades, these records were available to researchers to carry out their work.
There is also concern that the new restrictions on Medicare and Medicaid records will interfere with the quality of the care patients get. Now that information on a patient can't be shared between providers without a patient's consent, an individual with a history of substance abuse could choose to hide that important detail from one health care provider. This could have potentially dangerous results if that patient is able to get a prescription for a narcotic painkiller from a provider who has no idea of their history with drug use.
Is it possible for patients to have the privacy they desire, while still granting researchers the right to access their information for important research? That's the question being posed right now to hopefully help find a balance between research needs and patient privacy concerns.
It's already a requirement for researchers to work in secure environments where data can't be leaked or used for other purposes. There are strict penalties in place for researchers who don't follow privacy requirements. Getting access to Medicare or Medicaid records is not possible without following the stringent requirements for patient privacy. But there can always be room for improvement to the data protection protocols already in place.
Many believe that this suppression of medical data is coming at a time when research is desperately needed to help better treat opioid and prescription drug abuse, find new drugs to treat hepatitis C, and better coordinate treatment between medical providers. The issue is expected to be revisited by healthcare administration once again, so hopefully some kind of balanced decision can be reached.