1. Forming and Sustaining Community Groups / Community Advisory boards (CWGs/CABs) Presenter: Smangaliso Ntshele Community Mobilization Project Leader, Medical Research Council, RSA, HIV Prevention Research Unit (HPRU)

2. INTRODUCTION: Community participation – cornerstones of all effective public health action. Community members – involved from inception of research planning. Active and informed people – reduces the potential conflict in research.

3. What/ Who is the Community in Research? People who are directly and indirectly participating in research which can be, –Individuals –Partner –Family –Community structures

4. Why Community Participation in research? Joint decision making in research process Sustained collaboration and partnerships HIV prevention research must understand cultural, social and ethnic sectors. Impact on policy implementation.

5. Forming/Establishing CWG/ CAB: Representatives from study population Prevention advocates Women Groups Youth groups Political leaders Religious leaders Health care professionals Ordinary Citizens PWAs NGOs / CBOs Traditional Leaders etc. Membership may include but not limited, NB: CWG / CAB members’ recruitment should be an ongoing process.

6. Process of CWG / CAB Formation: Each study site to designate a paid staff employee to serve as the liaison to the CAB to help facilitate the process. Invitation of all relevant stakeholders identified in the community Launch Seminars, Workshops and trainings of the potential CWG / CAB members – ongoing Development of Situational Analysis and needs assessment together with the CLO. Interim election for different portfolios amongst the members for co-ordination.

7. Development of Roles and Responsibilities of CWG / CAB, which may include, –Serving as the voice for the communities and study participants. –Formulation of recommendations and strategies regarding the research agenda. –Assisting in development and implementation of community education activities –Advise in the development of study documents e.g. informed Consents –Advise in the development and implementation of recruitment and retention strategies Process of CWG / CAB Formation: continued

8. Development of Roles and Responsibilities of CWG / CAB, which may include, –Dissemination study information to the local communities –Provide input from real – life experiences –Recruit and orientate new CWG / CAB members –Convening regular meetings (monthly) –Organising HIV prevention awareness programmes in the community –Facilitate formation and sustainance of support groups (infected and affected) –Serve on the conference calls (preferably chair) Process of CWG / CAB Formation: continued

9. Identification of training needs for the CWG / CAB –Clinical Trials –Informed Consent –Ethics and confidentiality –Laboratory issues etc. –Volunteerism Process of CWG / CAB Formation: continued

10. Formalisation of the CWG i.e. –Terms of Reference –Objectives –Mission Statement –Support from the Study Site Process of CWG / CAB Formation: continued

11. Sustaining CWG / CAB: Full representation of community structures Transparency and openness on benefits and risks for being in the study Identification of community benefits e.g. Clarity on Social Responsibility Clearly articulated mission statement, bylaws and objectives CWG / CAB member orientation and background materials PI involvement and responsiveness to CAB concerns

12. Acknowledgement of the value and significance of community input Training and technical support Good facilitation Logistical support – meetings, transport assistance, refreshments and conducive meeting space Identification of CWG / CAB roles and responsibilities Sustaining CWG / CAB: continued

13. Development of community – based HIV Prevention Awareness Programmes Continuous training and engagement Develop sense of independence and ownership of HIV Prevention Programmes Regular CAB/PI question and answer sessions Sustaining CWG / CAB: continued

14. Challenges in Forming and Sustaining CWG / CAB: Engagement in complex community structures Politicizing every effort of research Resistance to new interventions vs traditional values Lack of political support Misconceptions about condom use and HIV Bureaucracy Lack of volunteerism (employment/incentives) Over-stepping roles and responsibilities