Coming of age during an era that vilified people who used drugs, harm reduction arose at intersections of lived experience and research. As an untested set of interventions which undermined core existing approaches like abstinence-only drug policies, harm reduction had almost no funding opportunities in the beginning. One exception were research grants that allowed for pilot projects of harm reduction interventions to be tested and allowed some funding to trickle down to folks doing grassroots work. In turn, much of this research was based on the lived experience of people who use drugs, including the lived experience of people who used drugs who also happened to be academic researchers. This research, which time and again proved that compassionate, person-first harm reduction interventions work to reduce costs and harm, acted as a catalyst for further research proving its legitimacy, and more funding despite intense public resistance. In addition, harm reduction began as a means to reduce disease burden, and many of its early proponents were or became public health experts. Moreover, data collection has allowed harm reduction programs and proponents to not only prove that what they are doing is objectively effective, it allows SSPs to interrogate the efficacy of their programs to ensure that they truly “meet people where they are at”.
This background provides the context for, and motivations of, harm reduction organizations to collect and analyze data. In general there are two types of reasons for SSPs to collect data; external and internal ones.
External reasons for collecting data include: legal, contract, and funder obligations. Legal obligations make up a minority of external reasons for data collection, and include some disease surveillance and/or other regulatory public health concerns. The more common external reasons are contract or funder obligations.
Government contracts often require contractees to track certain data, such as number of syringes given and/or collected, tests performed, referrals made, or other services performed. They may also require agencies to track disease, demographic, or other data. Sometimes agencies decide on how they will track this information but, more often, government agencies will provide SSPs with the data collection tools they are required to use. Private funders also often require certain data to be collected and reported, such as number of participants seen and services provided, but they rarely provide specific tools for data collection.
Internal reasons for data collection include internal reporting such as Board and donor reports and, perhaps more importantly, quality control and assurance. Data collection and analysis allows programs to objectively analyze if interventions and the program are working, and to discover what needs to be changed or updated. This is especially important when working with marginalized communities in which circumstances and needs change rapidly, and around whom there is a great deal of stigma and bias. Finally data collection and analysis can also provide a way of empowering participants by giving them a concrete voice in service provision and discovering their unmet needs.
