WORKING MORE CLOSELY WITH THE COMMUNITY Jorge Garrido, Director Apoyo Positivo Cesar Velasco, ECDC
“Tell me and I will forget. Show me and I maybe remember. Involve me and I will understand� Confucius
• Quality
Level of community involvement
• Community involvement
“The process of working collaboratively with and through groups of people affiliated by geographical proximity, special interest, or similar situations to address affecting the well-being of those people� Community involvement definition, CDC, 1997
What is public involvement in research? • INVOLVE defines public involvement in research as
research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
• Goals • to build trust • to enlist new resources and allies • to create better communication • to improve overall health outcomes as successful projects
evolve into lasting collaborations
• Ref. National Co-ordinating Centre for Public Engagement. Funded by the UK Higher Education
F u n d i n g C o u n c i l s , R e s e a r c h C o u n c i l s U K a n d t h e W e l l c o m e Tr u s t . h t t p : / / www.publicengagement.ac.uk/work-with-us/completed-projects/beacons
Actors
Ref.Jonathan Boote, Rosemary Telford, Cindy Cooper. Consumer involvement in health research: a review and research agenda. Health Policy 61 (2002) 213–236
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Sites • Research can be based and or coordinated by: • Profit organization • Non-profit organization • NGOs • CBO Community Based organizations
• Ref: Community-based organizations in the health sector: A scoping review. Michael G Wilson, John
N Lavis and Adrian Guta . Health Research Policy and Systems 2012, 10:36 doi:10.1186/1478-4505-10-36. Available at: http://www.health-policy-systems.com/content/10/1/36
What public involvement in research is not. • Researchers and others use different words to describe
public involvement, for example words such as engagement and participation. • When INVOLVE uses the term ‘public involvement’ we are
not referring to researchers raising awareness of research, sharing knowledge or engaging and creating a dialogue with the public.
Process of community engagement.
Involvement: • Where members of the public are actively involved in
research projects and in research organisations. • Examples of public involvement are: • As joint grant holders or co-applicants on a research project • Involvement in identifying research priorities • As members of a project advisory or steering group • Commenting and developing patient information leaflets or other research materials • Undertaking interviews with research participants • User and/or carer researchers carrying out the research
Participation and engagement • Participation: where people take part in a research study. Examples
of participation are: • people being recruited to a clinical trial or other research study to take part in the research • completing a questionnaire or participating in a focus group as part of a research study. • • Engagement: where information and knowledge about research is
provided and disseminated. Examples of engagement are: • science festivals open to the public with debates and discussions on research • open day at a research centre where members of the public are invited to find out about research • raising awareness of research through media such as television programmes, newspapers and social media • dissemination to research participants, colleagues or members of the public on the findings of a study.
Projects proposals: • Is your organisation a registered nonprofit or charity, non-
governmental organisation (NGO) or community-based organisation (CBO)? • Does your organisation focus on supporting people living with HIV or help to raise awareness of HIV among the general public? • Do people living with HIV and other inadequately served populations serve on the board of the organisation? • Does your organisation involve people living with HIV and other inadequately served populations in the development and implementation of programs and activities?
Useful concepts • culture and community engagement • community organization • community participation • constituency development • capacity building • community empowerment • coalition building
Principles • Be clear about the purposes or goals • Become knowledgeable about the community • Go to the community • Remember and accept that collective self-determination • Partnering with the community • Respect the diversity of the community • Identify and mobilize community assets and strengths and
by developing the community’s capacity and resources to make decisions and take action. • Release control of actions or interventions to the community • Community collaboration requires long-term commitment
Meaningful community participation extends beyond physical involvement to include generation of ideas, contributions to decision making, and sharing of responsibility.