Crucial but understudied: incentives in HIV research
Authors: Brandon Brown, Jerome T Galea, Karine Dubé
Journal: The Lancet HIV (2017)

In this issue of The Lancet HIV, Katherine Kranzer and colleagues1Kranzer KSV Simms V Bandason T et al.Economic incentives for HIV testing by adolescents in Zimbabwe: a randomised controlled trial.Lancet HIV. 2017; (published online Nov 20;)http://dx.doi.org/10.1016/S2352-3018(17)30176-5Summary Full Text Full Text PDF PubMed Scopus (38) Google Scholar report that economic incentives for caregivers in Zimbabwe increased uptake of HIV testing and counselling by children aged 8–17 years compared with caregivers with no financial incentive. HIV testing of groups that are hard to reach is a formidable challenge worldwide, and innovative strategies to reach adolescents in particular are crucial to reaching UNAIDS' 90-90-90 goals.2UNAIDS90-90-90: an ambitious treatment target to help end the AIDS epidemic. Joint United Nations Programme on HIV/AIDS, Geneva2014Google Scholar These results provide further evidence of the importance of incentives to motivate research participation (in this case, receiving an HIV test) as part of a large community-based household survey. Still, the question remains as to what incentive amounts are appropriate, inadequate, or excessive.3Brown B Galea JT Davidson P Khoshnood K Transparency of participant incentives in HIV research.Lancet HIV. 2016; 3: e456-e457Summary Full Text Full Text PDF PubMed Scopus (11) Google Scholar Although the issue of undue inducement might be less problematic in routine care (HIV testing) versus early phase, riskier HIV-cure research, the issue is the same: the process leading to the study's incentive amounts are unknown. For example, were community members or the participant population consulted on the incentive decision? The volunteer community wants to have a say on the type and amount of financial incentives in HIV research.4Mduluza T Midzi N Duruza D Ndebele P Study participants incentives, compensation and reimbursement in resource-constrained settings.BMC Med Ethics. 2013; 14: S4Crossref PubMed Scopus (17) Google Scholar Engagement with participants on the topic of payment is just one of the many types of consultation that should occur in research.5UNAIDSGood participatory practice. Guidelines for biomedical HIV prevention trials. Joint United Nations Programme on HIV/AIDS, Geneva2011Google Scholar In short, this includes engaging the participant community beforehand, collaboratively pursuing research ideas that address a topic that is important to the community, using methods that are acceptable to community, and involving community input and leadership in every phase of the project. In the present study, the fixed US$2 incentive is about 2% of the average monthly income ($100) of study households, meaning that $2 approaches the daily household income. The $10 lottery is about 10% of the monthly income. Although payment cannot be considered a benefit from the regulatory perspective, study participants nonetheless often consider financial incentives as a benefit received in exchange for study participation.6Czaicki NL Mnyippembe A Blodgett M Njau P McCoy SI It helps me live, sends my children to school, and feeds me: a qualitative study of how food and cash incentives may improve adherence to treatment and care among adults living with HIV in Tanzania.AIDS Care. 2017; 29: 876-884Crossref PubMed Scopus (14) Google Scholar This might be even more salient in resource-limited settings. Another issue worth further exploration is the sustainability of economic incentives for HIV testing in a non-research context. Payment is a strong motivator for caregivers to have their children tested for HIV, but it remains to be seen whether the approach will work in a programmatic setting. Additionally, payment for HIV testing in a research study could generate unrealistic expectations about receiving such payments when the study ends, potentially leading to refusal of non-compensating HIV testing. In fact, some researchers7Tolley EE Taylor J Pack A et al.The role of financial incentives along the antiretroviral therapy adherence continuum: a qualitative sub-study of the HPTN 065 (TLC-Plus) Study.AIDS Behav. 2017; (published online June 13.)DOI:10.1007/s10461-017-1821-7PubMed Google Scholar have shown that incentives might not be able to overcome important barriers to care. A third issue is the use of payments to incentivise caregivers to get their children tested for HIV. Although payment was not concealed from the children, whether the children received any portion of the payment is unknown, although it was the children who received the HIV test. This approach was entirely appropriate in this context, but raises unique ethical concerns with respect to providing financial incentives to children, including payment possibly unduly influencing their decision making or that of their parents.8Healy J Hope R Bhabha J Eyal N Paying for antiretroviral adherence: is it unethical when the patient is an adolescent?.J Med Ethics. 2017; 43: 145-149Crossref PubMed Scopus (6) Google Scholar However, if a nominal amount of money can help get hard-to-reach people tested for HIV and treated if indicated, there could be large, long-term savings in medical costs by treating those with early HIV disease sooner rather than later and by adverting onward transmission if these patients are virally suppressed.9Baggaley RF Irvine MA Leber W et al.Cost-effectiveness of screening for HIV in primary care: a health economics modelling analysis.Lancet HIV. 2017; 4: e465-e474Summary Full Text Full Text PDF PubMed Scopus (38) Google Scholar Use of financial incentives to support participation in HIV research is standard practice, and Kranzer and colleagues present a compelling case for incentivised programmatic HIV testing. Additionally, recent evidence10El-Sadr WM Donnell D Beauchamp G et al.Financial incentives for linkage to care and viral suppression among HIV-positive patients: a randomized clinical trial (HPTN 065).JAMA Intern Med. 2017; 177: 1083-1092Crossref PubMed Scopus (81) Google Scholar supports the use of financial incentives to increase viral suppression and clinic attendance in people living with HIV and to improve treatment adherence in patients with substance use disorders.11Wohl DA Allmon AG Evon D et al.Financial incentives for adherence to hepatitis c virus clinical care and treatment: a randomized trial of two strategies.Open Forum Infect Dis. 2017; 4: ofx095Crossref PubMed Scopus (14) Google Scholar These are good and desired outcomes for patients. Nonetheless, the ethical issues of incentive use in this and other types of HIV research, especially research with greater risks such as HIV cure research, warrant deeper exploration. BB received support from a NIH diversity supplement (3R01AI114617-03S1). JTG and KD declare no competing interests. Economic incentives for HIV testing by adolescents in Zimbabwe: a randomised controlled trialFixed incentives and lottery-based incentives increased the uptake of HIV testing by older children and adolescents, a key hard-to-reach population. This strategy would be sustainable in the context of vertical HIV infection as repeated testing would not be necessary until sexual debut. Full-Text PDF Open Access