1. Participatory Health Research with Vulnerable Groups Hella von Unger, PhD Social Science Research Center Berlin (WZB) Research Group Public Health Reducing Health Inequalities, Berlin, 8 May 2009

2. Contents 1.What is Participatory Health Research? Definition and key characteristics 2.Participatory Health Research with Vulnerable Groups Strengths and Challenges 3.Example: Participatory Study Design Participation and Cooperation in HIV prevention with vulnerable migrant communities in Germany (PaKoMi- Study) 4.Looking Ahead: Future Developments

3. Defining Participatory Health Research Community-Based Participatory Research (CBPR) Participatory Action Research (PAR) “[CBPR is] a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change.” (Viswanathan et al. 2004: 6)

4. Key characteristics of CBPR: builds on strengths and resources within the community facilitates collaborative, equitable partnerships in all phases of the research promotes co-learning and capacity building among all partners integrates and achieves a balance between research and action for the mutual benefit of all partners emphasizes the local relevance of public health problems and ecological perspectives that recognize and attend to the multiple determinants of health and disease disseminates the findings and involves all partners in the dissemination process involves a long-term process and commitment (Israel et al. 2003)

5. Participatory Health Research with Vulnerable Groups: Strengths and Challenges Involving members of vulnerable groups and communities  local knowledge and expertise  better „fit“ of research aims, better data, better solutions for local health concerns Initiating change: Mobilization, Capacity Building, Impact Building trust and partnerships; shared decision making; effort; language; time

6. Example: Participatory Study Design (PaKoMi-Study) Participation and Cooperation in HIV prevention with vulnerable migrant communities in Germany (PaKoMi-Study) PI: Hella von Unger (WZB) Main cooperation partners: German AIDS-Hilfe e.V. (Silke Klumb, DAH) and local stakeholders (service providers, community members, etc.) in 4-6 communities Study Duration: 10/2008-10/2011 Funded by the Federal Ministry of Health (BMG)

7. Background Epidemiology of HIV/AIDS: increased vulnerability of some migrant groups in Germany HIV prevention strategies and services for vulnerable migrant communities Close cooperation of different stakeholders needed, including researchers, service providers and migrant communities: Cooperation of different social and health-related service providers (bringing together professional knowledge, expertise and services) Participation of members of vulnerable groups and their local communities (cultural “insider” knowledge)

8. Project Aims 1.Capacity Building: Enabling members of migrant groups and communities, local service providers and researchers to develop appropriate HIV prevention interventions/services for vulnerable migrant groups in a participatory way 2. Theory Building: Investigating the processes and outcomes of participation as well as the conditions that foster and hinder the participatory development of HIV prevention for migrant groups 3. Outcomes and Impact: Dissemination of findings with scientific and practice-related relevance including suggestions, tools and methods for improving HIV prevention services for vulnerable migrant groups in Germany

9. Study Design 1.Quantitative survey of local ASOs regarding HIV prevention for migrant communities (N=118) 2.Advisory Board (scientific, professional and community expertise) 3.Case studies: Participation and cooperation in HIV prevention with migrant communities (18 months) 4.Workshop-Series: Training, Capacity Building, Networking, Exchange 5.Participatory analysis of study findings & outputs 6.Dissemination strategies: Presentation and publication of suggestions, manual, methods & examples

10. Looking ahead Establishing Participatory Health Research in Germany Broadening the methodical and methodological spectrum of Public Health Including participatory research methods in teaching and training of health professionals Participating in the international discourse on CBPR and PAR Networking: Nationally (Partnet) and internationally (Community Campus Partnerships for Health (CCPH); Int. Collaboration for CBPR in Health; 10.-11.5. Toronto)

11. PaKoMi-Study: Hella von Unger (WZB); E-Mail: unger@wzb.eu Silke Klumb (DAH); E-Mail: silke.klumb@dah.aidshilfe.de International Collaboration on CBPR for Health: Michael T Wright (WZB); E-Mail: wright@wzb.eu Further Information