Community engagement in HPTN 071 (PopART) trial: lessons learnt from implementing a novel data collection Technique photo-journal

Transcription

1 Community engagement in HPTN 071 (PopART) trial: lessons learnt from implementing a novel data collection Technique photo-journal JABULILE BALENI, ANGELIQUE THOMAS, NOZIZWE MAKOLA, MUSONDA SIMWINGA AND GRAEME HODDINOTT ON BEHALF OF THE HPTN 071 (POPART) STUDY TEAM U.S. NATIONAL INSTITUTES OF HEALTH: National Institute of Allergy and Infectious Diseases National Institute of Mental Health National Institute on Drug Abuse

2 Context of study HPTN 071 (PopART) is a cluster-randomised trial evaluating a combination HIV prevention intervention being implemented in Zambia and South Africa.

3 SF7 SG13 Context of study 21 Community Clusters 12 in Zambia / 9 in South Africa Randomization Arm A Clusters: 4 Zambia / 3 South Africa Intervention Combination prevention including: universal household-based testing active linkage to care immediate ART eligibility Research/Evaluation Population Cohort Arm B Clusters: 4 Zambia / 3 South Africa Intervention Combination prevention including: Universal household-based testing active linkage to care ART eligibility according to national guidelines Population Cohort Arm C Clusters: 4 Zambia / 3 South Africa Standard of Care Control Arm: Existing prevention & testing services and referral for care Population Cohort

4 Slide 3 SF7 SG13 could simplify by putting teh PC which is teh same in each of the community as one over-arciung box and then allows the intervention and so the differences between arms to be beter seen? Sarah Fidler, 05/06/2017 Agree, I feel that this slide should be much simpler to be useful in a slide presentation. Sam Griffith, 05/06/2017

5 Community Advisory Boards (CABs) Community engagement (CE) is an approach aimed at improving the conduct of research and its outcomes by including community input into the design and implementation of studies (Simwinga, et al (2016)). CABs are a commonly used strategy for involving the community in research (Simwinga, et al.(2016)).

6 Community Advisory Boards (CABs) A CAB is a link between the study and the researched community. CABs promote respect for participants, build trust between researchers and community members and promote inclusion of key stakeholders in the research process (Simwinga, et al (2016)).

7 HPTN 071 (PopART) CAB Community Advisory Board In South Africa two members from each clinic health committee were elected to form the CAB. The health committee members nominated two names from the 9 clinic sites. These members are local individuals from the study communities. The CAB meets once every month. A variety of topics is discussed in the meetings such as; Refusal of participation in the study from community members. Myths about the study and how to clarify them. Assist at looking at the language used in the consent forms and questionnaires is easily understood by locals.

8 We ask? Aim: To explore and document community experiences of the HPTN 071 study with the CAB members. Objectives: To describe our process of implementing the photo-journal activity with the HPTN 071 (PopART) CAB in South Africa. To describe the CAB members perspectives on how the HPTN 071 (PopART) study has been experienced in their communities. To summarise challenges and advantages of using the photo-journal activity to document CABs experiences.

9 Methods In South Africa, 9 communities are represented by a CAB of 18 members. A photo-journal exercise was conducted with CAB members between July and October 2014 and May and September CAB members were given cameras to take pictures of events which according to them represented the visibility and impact of the study in their communities.

10 Methods The process involved three phases of data collection. An introductory group discussion. A day of photography, semi-structured observation. A closing-out group discussion.

11 Perspectives Ethical trial implementation.

12 JB1 Perspectives Ethical trial implementation cont.

13 Slide 11 JB1 Jabulile Baleni, 08/06/2017

14 SF4 Perspectives Trial s impact in the communities. Intervention site

15 Slide 12 SF4 need to remove the name (Delft South) from this Sarah Fidler, 05/06/2017

16 SF5 Perspectives Trial s impact in the communities cont- Non intervention site.

17 Slide 13 SF5 as befire remoive town 2 Sarah Fidler, 05/06/2017

18 Perspectives Engagement strategies

19 Lessons learnt High retention rates of CAB members due to employment opportunities. Flexibility is needed when conducting the activity. Patience with community members as they are not always reliable to keep appointments.

20 Conclusion The photo-journal activity enabled critical reflection by CAB members and researchers of the role of CE in cluster-randomised trials. Photography to be used a medium of expression in research.

21 ACKNOWLEDGEMENTS Sponsored by the National Institute of Allergy and Infectious Diseases (NIAID) under Cooperative Agreements # UM1 AI068619, UM1-AI068617, and UM1-AI Funded by: The U.S. President's Emergency Plan for AIDS Relief (PEPFAR) The International Initiative for Impact Evaluation (3ie) with support from the Bill & Melinda Gates Foundation NIAID, the National Institute of Mental Health (NIMH), and the National Institute on Drug Abuse (NIDA) all part of the U.S. National Institutes of Health (NIH)

22 The HPTN 071 Study Team, led by: Dr. Richard Hayes Dr. Sarah Fidler Dr. Helen Ayles Dr. Nulda Beyers Government Agencies: PEPFAR Implementing Partners:

23 With thanks to: All research participants and their families The 21 research communities and their religious, traditional, secular and civil leadership structures Volunteers in the community advisory board structures