Attitudes of Principal Investigators and Research Coordinators about Persons Who Use Illicit Drugs May Exclude Potential Research Participants

Background and Purpose: Persons who use illicit drugs (current and past) are often excluded from participation in research without specific medical reasons. There is an assumption that drug users are unreliable and non-compliant. Few researchers test for actual drug use during screening, relying instead on any report of drug use history. Methods: Through the Clinical and Translational Science Awards (CTSA), a three-phase research study, the Transformative Approach to Reduce Research Disparities Towards Drug Users Study was launched to help reduce research participation inequalities. Here we report on findings from an assessment of attitudes toward excluding, enrolling and retaining underrepresented populations, including drug users, in research. Using SurveyMonkey PIs and research coordinators (RCs) at a large research-intensive University in the Midwest were anonymously surveyed on attitudes and practices about recruitment, remuneration and retention of participants in health research. During summer 2010, 112 RCs and 221 PIs responded to the survey on-line; recruitment was accomplished via email. Results: The majority of the sample was born after 1960 (56% of PIs; 75% of RCs), were male (57%% PIs; 94% RCs) and Caucasian (83% PIs; 90% RCs). Some attitudes that would make it difficult to enroll those with drug use were found: 10% agreed with that statement that “illicit drug users participate in studies only for the money”; about 15% of the PIs and 10% of the RCs agreed that “it's too risky to include a current drug user in a study”; and almost 10% of both samples believed drug users couldn't be trusted to give honest answers in research. In contrast, a majority of both samples expressed concern with retention of drug users in studies. RCs endorsed users of crack cocaine as being the most difficult of populations to retain in a study (96% difficult to very difficult) while PIs ranked such users with men who consider themselves homeless (97% difficult to very difficult). In comparison, PIs and RCs were less likely to consider those with untreated depression (PIs=72% and RCs=62%) and those who misuse prescription medicines [also drug users] (PIs=70% and RCs=56%) as difficult or very difficult to retain. Those with chronic asthma were rated as easiest to retain. For instance, 10% of PIs rated the healthy volunteers as difficult or very difficult to retain but said less than 1% of those with chronic asthma fell in that category. Conclusions and Implications: Social desirability was reduced by the anonymity offered, but may still reduce the size of these estimates. Nevertheless, some of these PIs and RCs expressed negative perceptions that could result in prejudice against drug users in research and even in care. Our findings help define targets for educational interventions that might reduce such prejudice and improve the generalizability of research findings.