Monitoring & Evaluation of Community and Stakeholder Engagement. Nombuyiselo Tshandu Wits Clinical HIV/TB Research Unit South Africa

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1 Monitoring & Evaluation of Community and Stakeholder Engagement Nombuyiselo Tshandu Wits Clinical HIV/TB Research Unit South Africa

2 Clinical HIV Research Unit (CHRU) Based primarily at Helen Joseph Hospital in Johannesburg Division of Unit now established at Witkoppen Health Welfare Centre (WHWC)and Sizwe Hospital Conduct TB and HIV clinical trials

3 Community strategies for clinical trials: Increase knowledge and understanding about the disease and the research process among relevant community representatives. Obtain and incorporate stakeholder and community input into the clinical trial design. Understand and address stakeholder and community concerns in the research process so as to avoid misconception, disruption and premature closer of the trial. Enhance facilitation of recruitment and retention, as a result of culturally appropriate / community informed study design Improve implementation of the research findings and leading to stakeholder and community acceptance and uptake of health products under the study if appropriate.

4 M&E Tookit for CSE A new set of monitoring and evaluation tools has been developed by TB Alliance in partnership with AVAC, IAVI, DAIDS, NIAID, International HIV/AIDS Alliance and Wellcome Trust. The toolkit provides a user-friendly set of quantitative and qualitative tools and database to evaluate CSE activities at the clinical trial site-level. The tools have been piloted at both TB and HIV clinical trial sites in South Africa, including teams at CHRU, Aurum Institute, PHRU and WRHI. M&E Implementers Workshop was held in Johannesburg, South Africa September Toolkit will be finalized and distributed by end of 2014.

5 Why M&E of CSE is important Community Stakeholder Engagement (CSE) plays an important role in the clinical research process, and has become a widely accepted best practice in clinical trials. Need to build an evidence base demonstrating the impact CSE has on communities and clinical trial outcomes. New M&E tools are needed to help site-level CSE teams to measure the outcomes of these activities.

6 Planning CSE for impact Why indicators are important? Indicators allow for comparisons over time, over different geographical areas and across different programs. The M&E toolkit provides a framework of indicators to help CSE teams plan measurable engagement activities throughout all phases of a clinical trial, including: Research site planning and preparedness Trial conduct Community benefits; and Research outcomes

7 Defining the community.

8 The M&E toolkit hopes to. Determine how effectively CSE teams have identified the right community leaders and groups to engage Determine how effectively CSE teams are engaging the right community members, or not engaging them Measure the knowledge and understanding of community members about local clinical trials and TB Measure the engagement of community members in local clinical trials and community health issues Measure the level of engagement of research staff in sitelevel CSE activities Improve the quality of CSE programs

9 M&E Tools Daily and monthly data collection forms: to document ongoing CSE activities, stakeholder engagement and clinical trial information Quarterly Interviews: to assess the level of engagement with community stakeholders, advisory group members and broader stakeholders through consultation Annual Self-Assessment tools: for CSE managers and principal investigators to improve the quality of the program overall.

10 M&E Tools

11 Examples of things tools hope to measure Seeking support from community and stakeholder Gatekeepers : Are partners bringing influential people within the community on board with the research by making sure that they are well informed? If so how? Listening to (and acting on) feedback from communities and stakeholders on research: Are partners addressing challenging issues that arise from the community throughout its lifecycle and picking them and responding to them early? If so how? Creating awareness of specific research projects: Are partners creating awareness of the aims and activities of a specific study and talking about any areas of concern more widely within a community, or with specific groups within the community? Are they promoting acceptability of the research and support for informed consent? If so, how? If not, what are they achieving?

12 The Draft Toolkit Components A Compilation form of CSE activities - to be completed after all activities and monthly outputs generated Focus on 4 aspects of CSE OUTREACH to large groups These include outreach related to any health calendar events, screening days, community meetings or, theatre or music events, education sessions includes results dissemination MEDIA These include radio, flyers, posters, newsprint, television, press releases and social media.

13 Without community wisdom and support, our work together would not be possible Thank you