pandemic, privacy, confidentiality, duty of care, ancillary care, substance use, HIV prevalence, qualitative interviews, virtual data collection, people who inject drugs (PWID)
During the COVID-19 pandemic Southeast Asian countries, like much of the world, instituted travel and movement restrictions to promote social distancing and curb community transmission of the virus. With these and other interruptions in daily activities, research operations were altered, including for research involving vulnerable populations.
People who inject drugs (PWID) (estimated at 156,000 people in Malaysia) are at risk of contracting HIV through sharing needles and syringes1 and have traditionally experienced socioeconomic marginalization, stigma, discrimination, homelessness, substance use disorders, and mental illness. This has contributed collectively to poor health outcomes.2,3 Harm reduction services, including medications for opioid use disorder, needle-syringe exchange programs, and referrals for HIV care are critical for HIV prevention in this population. Although existing interventions to connect PWID with HIV services are supported by community outreach programs through referrals and case management,4 these programs have yet to be evaluated and monitored.
During the COVID-19 pandemic, a research team aimed to determine current drug use patterns, health and social circumstances of drug use, and HIV and hepatitis C infection in PWID at least 18 years of age who lived in a suburban area. A secondary goal was to encourage hard-to-reach PWID to access harm reduction services and HIV care, modeled on a community-based, HIV outreach navigator approach. Research participants were interviewed for about an hour and then tested for HIV and Hepatitis C virus (HCV) by community health care workers. To accommodate pandemic limitations, the researchers developed an innovative, two-way virtual communication platform between interviewers and study participants. The use of two separate interview rooms and a minimal number of research staff ensured privacy and confidentiality for research participants.
During an interview, one research participant reported problematic use of amphetamine-type stimulants and later sought health advice from the interviewer about controlling substance use. Drug use during the pandemic increased, as many individuals used substances to try to overcome psychological stress from financial limitations, loneliness, and isolation. In some countries, increased use of stimulants5 has been shown to be associated with heightened risk of overdose and mental health disorders.6,7 Although this research was not structured to measure problematic drug use other than opioids, the research team offered a brief educational session on stimulant use.
Questions
Pandemic challenges have sparked technological advances in data collection, particularly to create a safe environment for both research staff and study participants. Nevertheless, researchers have a responsibility to show respect by building trust and establishing rapport with participants. Do virtual interviews pose ethical complexities for showing respect for participants? Do they present any particular challenges related to maintaining confidentiality for research that involves sensitive or stigmatizing conditions? What ethics-related recommendations might you share with researchers who wish to use virtual modalities for a research study that involves such conditions?
Research that investigates behavioral health conditions and that collects data that may signal a risk of harm to oneself or others can often raise questions about the ethical responsibilities of researchers toward research participants. In general, what do you think the researchers in the above case should be prepared to do to meet those responsibilities? Do you think it was appropriate to have provided the educational session on stimulant use, even though this went beyond the scope of their research topic?
Current Malaysian law stipulates that signed consent must be obtained for telemedicine consultation. Should this also be the case for virtual interviews conducted for research purposes? More generally, what might be some best practices for consent when data are collected remotely?
