Taking treatment of chronic lifelong conditions to scale: applying the positive deviance approach to health programme management. (360G-Wellcome-105845_Z_14_Z)

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 "selfmanagement" 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.