Engaging Communities in Research: The Unexpected Rewards of Keeping It Real

Darius Tandon Adrian Mosley

Inez Robb

Researcher Recertification Course April 25, 2012

Workshop Objectives

• To promote researcher understanding of community-engaged research and how it differs from “traditional” research that does not involve partnering with community

• To help researchers understand how community-engaged research can benefit their research studies

• To provide resources to researchers to help support their community-engaged research

What is Community-Engaged Research?

• Research that involves community in the research process

• Broad spectrum of community-engaged research

– Community-placed/based; no community-researcher collaboration

– Community-placed/based; some community-researcher collaboration

– Community-based participatory research

Community-Based Participatory Research (CBPR)

“A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings”.

--W.K. Kellogg Foundation (2001)

Characteristics of CBPR

1. Collaborative, equitable partnership in all phases of research

2. Community is the unit of identity 3. CBPR builds on strengths and resources of

community 4. CBPR fosters co-learning and capacity building 5. Balance between knowledge generation and

benefit for community partners

Characteristics of CBPR (Cont…)

6. CBPR focuses on problems of local relevance 7. CBPR disseminates results to all partners and

involves them in wider dissemination of results 8. CBPR involves a long-term process and

commitment to sustainability

Israel, Eng, Schulz, & Parker (2005). Introduction to Methods in Community-Based Participatory Research for Health. In Methods in Community-Based Participatory Research for Health.

How Does CBPR Differ from “Traditional” Research?

Data is shared, researchers and community decide its use and

dissemination

Researchers own the data & decide how it will be used & disseminated

Researchers own data, control use & dissemination

Researcher & community share control equally

Researchers control research, community representatives may help make minor decisions

Researchers control process, resources & data nterpretation

Researchers & community work together to help build

community capacity

Researchers gain skills & knowledge, some awareness of helping community develop skills

Researchers gain skills & knowledge

Community organizations are partners with researchers

Community organizations may help recruit participants & serve on Advisory Board

Community organizations may assist

People as participants & collaborators

People as participants People as subjects

Research WITH community as full partner

Research IN the community, or WITH the community

Research IN or ON the community

Community identifies problem or works with researcher to

identify problem

Researcher defines problem,

Researcher defines problem

Community-based Participatory Research

Community-placed Research

Community-engaged Research Traditional

Research Approach

Research WITH community as partner

Challenges to the Researcher-Community Relationship &

Keys to Effectiveness

Mr. Big Stuff, Who do you think you are?

• Only academia is capable of teaching • Researchers have differing levels of

understanding of cultural relevance • Cultural difference is viewed as an obstacle, not

a strength • Researchers appear unaware of community

assets and strengths • Researchers are transient and appear detached

Six Points to Effectiveness #1

“ Don’t be all in the Kool-Aid if you don’t know the flavor”

Six Points to Effectiveness #2

“When You Mess Up, Fess Up”

Six Points to Effectiveness #3

“ Figures don’t lie, but liars do figure”

Six Points to Effectiveness # 4

“This is how we do it, do it.”

Six Points to Effectiveness #5

“ Will it go round in circles, will it fly high like a bird up in the sky.”

Six Point to Effectiveness #6

“Say Amen, Somebody”

How Can a Community-Engaged Research Approach Assist Your Project? 1. Starting a Project 2. Implementing a Project 3. Sustaining a Project

Starting a Project

• Refining a research question – Local/community knowledge about health topic is

combined with existing research/data – Creates greater ownership of project if research

questions are collaboratively agreed upon – Additional, community-driven, research questions

may be added to researcher-driven questions

Starting a Project

• Forming partnership with community collaborators

– Individuals based outside of academic institutions who provide guidance on different phases of a research project

– Considerations in selecting community stakeholders for a

study: • Funding requirements • Objectives of project (or center/institute) • Type of input needed • Broad spectrum of perspectives that includes consumer/clients • Present and future needs for community input

Activity: Selecting Key Community

Stakeholders

Implementing a Project

• Recruitment/retention – Where should recruitment take place? – What are incentives that will keep participants

engaged? – Are there community-based organizations that can

destigmatize participation in study? – Can community members be hired to help with

recruitment and retention? – Can an advisory board help improve

recruitment/retention mid-intervention?

Implementing a Project

• Development of contextually/culturally appropriate intervention strategies --Selecting time and location of intervention --Identifying skills/experiences needed for intervention

staff; hiring community members to fill these roles --What experience does the community have with other

interventions?

Implementing a Project

• Translating efficacious intervention into new and/or community settings – Variability in culture, resources, organizational

capacity, etc. – CBPR emphasizes working with local stakeholders

to create adaptations to new, diverse settings – Adaptations take advantage of strengths/resources

of community setting

Disseminating Study Findings

• Too often, study findings are not shared back with communities who are the site(s) of research

• Community can help advise on: – Appropriate venues/settings to share study findings – Appropriate approaches, format, and language for

sharing study findings

Sustaining a Project

• CBPR can help in sustaining programs beyond initial grant period – Through community stakeholders’ networks,

integration of programs with existing programs/structures can be facilitated

– Local ownership of intervention/program likely to be greater because of ongoing collaboration

– Discussion of sustainability must start at beginning of partnership and be discussed on an ongoing basis

Acknowledgements

• Members of the ICTR Community Research Advisory Council who assisted in developing this workshop: – Lee Bone – Crystal Evans – Jess Holzer – Ede Taylor

Additional Resources

• ICTR Community Engagement Website http://ictr.johnshopkins.edu/communityengagement

• Community-Campus Partnerships for Health http://www.ccph.info/

• JHU Centers/Institutes conducting community-engaged research – Resource folder

Questions