Davidson Peter, Chakrabarti Priya, Marquesen Michael
Department of Medicine, University of California, San Diego, La Jolla, CA, United States.
Department of Obstetrics and Gynecology, Loma Linda University Health, Loma Linda, CA, United States.
Int J Drug Policy. 2020 Apr 4;79:102725. doi: 10.1016/j.drugpo.2020.102725.
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.
注射器分发项目（SDPs）是一种经过充分验证的公共卫生应对措施，用于应对艾滋病毒和其他血源性疾病在注射吸毒人群中的传播。美国的许多注射器分发项目被要求收集服务使用者的数据，这是其获得合法运营授权或获得资金的条件之一。我们试图通过一项在线调查来描述美国注射器分发项目中这种外部强制数据收集的普遍性及其对服务提供的影响。
对美国的注射器分发项目进行在线调查。
63个注射器分发项目参与了调查。95.2%的项目收集了关于个体服务使用者的数据，其中76.7%是受外部实体强制要求这样做的，作为合法授权和/或获得资金的条件。在被强制要求的受访者中，只有21.7%收到了关于数据使用情况的任何反馈报告。60.0%的项目报告称，由于服务使用者担心失去匿名性和/或执法问题，数据收集成为向吸毒者提供注射器的障碍。33.3%的项目报告称，收集数据所需的计算机技能和语言技能意味着社区中其他合适的成员无法被聘为工作人员或志愿者。
注射器分发项目的数据收集可能成为向艾滋病毒和其他血源性病毒高危人群提供服务的障碍，并给资源往往不足的公共卫生项目带来相当大的后勤负担。此外，注射器分发项目通常不清楚其数据被用于何种目的。我们认为，从伦理角度出发，应仔细考虑并定期审查数据收集的目的，以确保数据被用于有意义的目的，且与对服务提供的影响相称。
