1. 1 Increasing the Effectiveness of ARV Programs: Using Strategic Information on Individuals and Communities Carla Makhlouf Obermeyer July 1, 2003 Outline: Involving individuals and communities What sort of strategic information? How we get it

2. 2 Many public health interventions : are designed in a generic way that is not informed by local conditions neglect key strategic information make incorrect assumptions about individuals’ responses, condemn or dictate behaviors to individuals they mean to serve Neglecting the individual and community dimensions of ARV programs is hazardous Understanding local contexts, “community preparedness” and response are crucial to the success of any program Involving individuals. Danger that ARV programs will also face difficulties as a result of unanticipated community responses -- opposition, rumors, or indifference Assuming demand for testing and counseling, or expecting obedience from patients on treatment is unlikely to achieve high adherence Suboptimal adherence results in ineffective care, waste of resources, and drug resistance

3. 3 Characteristics of strategic information to involve individuals and communities 1. Expands our scope beyond narrowly defined factors, to include what happens outside of health facilities 2. Helps formulate realistic goals, translate key elements and adapt tools to local contexts 3. Strategic information about local concepts is essential to plan effective programs 4. Is attentive to the role of “culture” but does not overstate it Such information is an integral part of M & E

4. 4 Treatment is not simply about the moment of taking the drug; the decision needs to be made over and over again Testing is not just getting information The formal system is but one source of information on treatment, others sources offer competing information 1. Strategic information expands our scope to include what happens outside of health facilities Consider individuals’ motivations, reasons for key behaviors and figure out how to foster change

5. 5 2. Strategic information helps formulate realistic goals and adapt tools High adherence: what drives it, what undermines it? Expectations from treatment reflect understandings of illness Obstacles to high adherence--forgetting, side-effects, “treatment fatigue”-- are the same but different reminders, instructions and support mechanisms have to be context-specific Testing and counseling programs: how they fit in the local health system Considering local understandings of illness and therapy, local patterns of health care use will strengthen program effectiveness

6. 6 3. Strategic information about local concepts is essential to plan effective programs Doubts about HIV: the Mbecki affair The meaning of tests: taking blood Seropositivity and disclosure Counseling: does it help? Ambivalence about medications: trust and control Misconceptions Misunder- standings Missed opportunities

7. 7 Combines tools from survey, in-depth ethnography, and rapid assessment An integrated approach Mixed methods How can we get such strategic information – 1 Anything that will help reveal views from the other side: observations, interviews, focus groups, cultural domain analyses, pile sorts… Adding open-ended questions to surveys Who can do it Staff who can be trained to observe, listen, and make good notes Staff that can analyze information and make actionable recommendations Collaborative projects contribute to capacity building

8. 8 At baseline At key points Routinely through the project When Cost How can we get such strategic information – 2 Scale and depth can be adapted to available resources; anything is better than completely neglecting this dimension Products Recommendations for improving effectiveness, based on good cultural information Better communication

9. 9 Conclusion As for other elements of efforts to scale up, we have to learn by doing...... but this has to be done