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

Level of community involvement

• Community involvement

• Qua

lity

“ T h e p r o c e s s o f w o r k i n g 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 Fund ing Counc i l s , Research Counc i l s UK and the We l l come Trus t . h t tp : / /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

Actors

Actors

Actors

Actors

Actors

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.