The following is a guest post by Kate Klein, Catherine Barker, Michelle Li, and Nena do Nascimento
Surprisingly little emphasis is placed on retention in care compared to other issues in the HIV sphere. For example, at the recent 2016 International AIDS Conference, only two of more than 200 sessions focused on this topic; and retention issues were rarely considered when discussing how to increase the number of people on treatment (the second 90 in the global 90-90-90 HIV goals).
Without ensuring patients continue to take their antiretroviral medication, we are not maximizing the returns on precious treatment dollars, and increasing the risk of drug-resistance and further transmission of HIV, since patients will not be virally suppressed.
This is why UNAIDS’ 90-90-90 goal includes the goal of ensuring that 90 percent of people living with HIV on treatment are virally suppressed. Viral suppression is possible through long-term, correct usage of ARV drugs, and this can only be achieved through mechanisms in the health system to support people living with HIV to stay on treatment.
Current evidence suggests that retention rates in sub-Saharan Africa are low. To better understand what can be done about this, the USAID- and PEPFAR-funded MEASURE Evaluation project held a web-based survey among more than 60 HIV specialists. Specifically, we asked them how countries are using routine data to monitor retention and keep patients in HIV care.
What did we learn?
- Some national guidelines exist: Roughly two out of every five respondents (44 percent) said that there are national guidelines requiring health facilities to follow up with ART patients defined as loss-to follow-up (LTFU) in the countries where they work.
- There are existing methods for increasing retention in care for people living with HIV: Survey respondents identified interventions using routine data to increase retention in care in South Africa, Nigeria, Tanzania, Uganda, Kenya, Zimbabwe, and other countries mostly in in sub-Saharan Africa. Both patient-level and aggregated data were used in these interventions, which included:
- improving health facility registers and data collection systems to be better able to identify patients
- reviewing available program data with key stakeholders and staff to understand retention rates within a health facility or program
- asking volunteers or program staff to follow up with patients who fail to return to the health facility for treatment—either in-person or by telephone
- More can be done to support the use of data that have already been collected to improve ART retention: Many respondents believed that health facility data were not adequately informing decision making to improve retention. Available data are not being used to their full potential.
What does this mean?
Using health facility data could increase rates of retention in care, thus increasing the effectiveness of ART medication and reducing rates of transmission of HIV. Data could be employed at multiple levels:
- Collecting and analyzing data in communities and facilities to identify who has defaulted and is in need of counseling and support to return to treatment.
- Strategic planning and policy making at the subnational and national level to ensure health facilities monitor program performance on retention and use the techniques described above to reduce the number of patients that stop taking their ARVs.
- Through South-to-South sharing of experiences on how available data has already been used to increase retention in care, and global learning on scaling up of these approaches. For instance, some countries are exploring how mobile technology and data visualization can help to identify and trace patients.
What challenges remain?
While the majority of survey participants believe use of available data can contribute to an increase in ART retention, challenges also emerged. Missing and incomplete data, due in part to scarce human resources and high workload, was often cited as a major barrier to using routine data for ART retention. As one respondent said, “Data use is still very low …training is needed to the healthcare providers to understand why they collect data in the first place.” Furthermore, complexities associated with populations affected by HIV, such as concerns about stigma and highly mobile populations, mean that patient data are often inaccurate, limiting their usefulness in locating late patients.
We in the HIV community have a wealth of data that we collect for reporting purposes and national and regional aggregation. Let’s explore how we can use this information to improve treatment outcomes and save lives by learning from each other on what approaches have worked thus far. MEASURE Evaluation will be holding a webinar in the coming months to discuss more of what we have learned and to hear from others on their experiences.
Nena do Nascimento is a monitoring and evaluation technical advisor with MEASURE Evaluation and works at Palladium. Kate Klein is an intern at Palladium and a graduate student at Johns Hopkins University’s Bloomberg School of Public Health. Catherine Barker is a senior associate in health at Palladium. Michelle Li is a monitoring, evaluation and data use specialist with MEASURE Evaluation and works at Palladium.
MEASURE Evaluation strengthens capacity in developing countries to gather, interpret, and use data to improve health. For more information on the project’s work on HIV and AIDS, see https://www.measureevaluation.org/our-work/hiv-aids.