Taking treatment of chronic lifelong conditions to scale: applying the positive deviance approach to health programme management

In sub-Saharan Africa, and in South Africa in particular, there are significant numbers of people living with HIV/AIDS. Increasingly, there are growing numbers of people who are also living with non-communicable disease such as diabetes and heart disease. Although HIV is infectious and diseases like diabetes are not, they share similarities in that they require lifelong management to ensure health. HIV treatment requires a consistent regimen of antiretroviral therapy (ART), while diabetes may require a change in diet as well as regular medication. For policy makers planning health care in South Africa, it is a big challenge to make sure that the state health system has a cost-effective plan to keep these people on treatment and accessing care throughout their lifetime. Although the South African government has made ART available free of charge, recent studies have indicated that many with HIV stop taking the drugs over time. This problem has worsened as the programme has expanded. This is dangerous for their health and is also worrying from a public health standpoint as it could lead to strains of the disease that are resistant to ART as well as increasing the chance of them passing the virus on. Significantly, some clinics dispensing ART have much higher rates of people continuing to pick up their treatment. This study aims to fill knowledge gaps about the factors that influence whether people stay in care, focusing on the ART programme in the Western Cape Province of South Africa. The results of the research will help us work with policy makers in the Department of Health and leaders of community-based organisations to design a larger project that will involve implementing a country-wide programme to achieve more continuous care for people with chronic lifelong conditions.

The study will involve researchers from different disciplines who are trained in medicine, the analysis of health systems and policies, social anthropology, public health and pharmacy. We will adopt a method that analyses existing numerical data monitoring how regularly people are collecting the ART drugs at clinics, and other HIV-related data. This will be used to identify which health facilities are performing better than others in terms of keeping people on treatment and engaged in their clinical care. We will focus our work on facilities serving poor populations who are socially marginalised. We will then go on to do more in-depth research in a few facilities which we have assessed as "good performers" and "bad performers" respectively. We will look in more detail at the information about HIV care and also look at indicators of whether people with diabetes are staying in care, using diabetes as an example for non-communicable disease. We will also collect information by observing practices in clinics, and interviewing staff and patients. Interviews will be conducted with decision-makers in the provincial and national Departments of Health. We will investigate the reasons for differences in performance and identify constraints to positive performance. We suspect that the facilities that are managing to keep patients in care, have more innovative organisational practices and have in addition forged partnerships with community-based organisations. This can then help to better support people to take part in managing their chronic illness themselves as well. Such "self-management" is an important factor in poorer settings where the health system cannot provide intensive support from health professionals. We will identify generic factors that are helping to keep people on ART in care and that, if adopted more generally, could contribute to improving care for other chronic conditions also. We will have a workshop with the Department of Health and other stakeholders to discuss how the lessons learned can improve the programmes for chronic disease at national level. This will assist in the design of a bigger intervention and a further research proposal.

The objective of this proposal is to conduct an interdisciplinary qualitative and quantitative study to address knowledge gaps about retention in care in the antiretroviral therapy (ART) programme in Western Cape, South Africa. This will inform the design of a larger intervention project with stakeholders for improving implementation, at scale, for a national-level programme to achieve high levels of treatment for chronic lifelong conditions (CLLCs). This study will adopt a "positive deviance" approach for implementing health programmes by identifying facilities which are outliers and analysing constraints to good performance for retention in care. We hypothesise that good performance relies on partnerships between the formal health system and community organisations to support disease self-management. The study will address these questions:
- What are the most important factors contributing to good performance for retention in care for facilities that are positive deviants in the ART programme?
- What are the major constraints to similar performance in other localities and how could an intervention for disseminating lessons from positive deviants help stakeholders overcome them?
- Which generic factors from the ART programme could contribute to good performance for other CLLCs?
Phase 1 of the study involves desk-based validation of the central database for chronic medication distribution and the routine management data from facilities for HIV. Facilities will be mapped by typology and paired according to an analysis of good and bad performers for retention in care for ART. In Phase 2, facility-level studies will involve investigating the data for HIV and also diabetes, as a tracer condition for all NCD. Qualitative research will explore the reasons for differences between facilities. In Phase 3, data analysis will facilitate communication of lessons learned and Phase 4 will involve a workshop with stakeholders to design a large scale intervention for CLLCs.

This initial proposal has a number of direct beneficiaries, mainly within the HIV/AIDS community in the Western Cape. The project is also designed in such a way that it has the potential to inform further work with even wider beneficiary groups, both geographically and those with other chronic lifelong conditions (CLLCs), such as diabetes.

As is clear from the attached letter of support, this project would be implemented in collaboration with the National Department of Health in South Africa. The University of Western Cape is currently responding to a request of the Provincial Department of Health of the Western Cape to investigate the dispensing of chronic medication by a contracted pharmaceutical company. In the Western Cape, this distribution of medication, including ART, thus already exists, the users of which will be the ultimate beneficiaries of this research. Below is a list of beneficiaries and how they stand to benefit from this research:

* Low income populations in the Western Cape in need of ART: By identifying transferable factors in facilities with higher-than-average retention rates in ART, the expectation is that other facilities in the area will also be able to improve their retention rates. Ultimately this has the potential to improve the health and wellbeing of those living with HIV. Retaining HIV positive individuals in ART is critical in reducing further infections (treatment as prevention) as well as in limiting the evolution of ARV-resistant strains of the HI virus. This has potential economic benefits as well, allowing them to remain productive members of society while simultaneously reducing potential time and monetary costs associated with their care.

* Local facilities: Both facilities that are currently above-average performers and those who are below-average performers may benefit from findings about what factors contribute positively to ART retention rates. This could improve efficiency in ART distribution for the pharmacuetical distribution company, as well as the inconvenience to facilities of returning undelivered stock.

* Local community-based organisations (CBOs) and civil society organisations (CSOs): Local CBOs, patient advocacy groups and other CSOs - such as the Treatment Action Campaign, the Community Media Trust and Medicins Sans Frontieres - will be included in the communication of findings from the proposed study. The hope is that they will be able to use that information to hold facilities to account and maintain pressure on them to implement relevant changes.

* Western Cape Department of Health: By improving the retention rate across facilities, the provincial Department of Health may benefit from greater efficiencies in the distribution of ART and less leakage within the current system. Greater adherence to ART may also reduce the rate of new HIV infections, which could have significant cost savings for the province across drugs, facilities and workforce.

Following this development study, should we be successful in acquiring further funding, we would hope that these benefits could be made on a wider scale, both geographically and in terms of other CLLCs. This is further articulated in the Impact Pathways section of this proposal. But to summarise, other provincial Departments of health, notably from the Eastern Cape, a resource-poor province, have expressed interest in research collaboration. At a national level, the Department of Health is currently being challenged to re-engineer primary care as part of its commitment to universal health coverage (UHC). Lessons from this study could inform the future design of national programmes to support people with a number of CLLCs, including diabetes and HIV/AIDS.