Impacts of mandated data collection on syringe distribution programs in the United States

Syringe Distribution Programs (SDPs) are a well-proven public health response to the spread of HIV and other blood borne illnesses among people who inject drugs. Many SDPs in the United States are required to collect data from service users as a condition of either legal authorization to operate or as a condition of funding. We sought to describe the prevalence of such externally mandated data collection and impact on service delivery at syringe distribution programs (SDPs) in the United States via an online survey.

Online survey of SDPs in the US.

63 SDPs participated. 95•2% collected data about individual service users, with 76•7% being mandated to do so by an external entity as a condition of legal authorization, and/or as a condition of funding. Only 21•7% of mandated respondents received any report back on how data was used. 60•0% reported that data collection acted as a barrier to providing syringes to people who use drugs due to service user fears about loss of anonymity and/or law enforcement. 33•3% reported that the computer literacy and language skills required to collect data meant otherwise appropriate members of the community could not he hired as staff or volunteers.

Data collection at SDPs may act as a barrier to service provision to populations at high risk for HIV and other blood born viruses, and place considerable logistic burdens on often under-resourced public health programs. Further, it is often unclear to SDPs what purpose their data is being put to. We argue that to be ethical, the purpose of data collection should be carefully considered and regularly reviewed to ensure data is being put to meaningful purpose which is commensurate with impacts on service delivery.