Principles of Community-Engaged Research

Introduction: Extractive vs. Engaged Research

Traditional Research Model (Extractive):

• Researchers come from outside
• Design studies based on academic interests
• Collect data from community
• Leave with data
• Publish in academic journals
• Community sees little benefit

Problems:

• Builds mistrust
• Misses community priorities
• Reinforces power imbalances
• Limited practical impact
• Can reinforce stereotypes

Community-Engaged Research:

• Community involved in all stages
• Addresses community-identified needs
• Builds on community knowledge
• Shares power and resources
• Produces actionable results
• Benefits stay in community

Part 1: Why South Asian Communities Are Underrepresented in Research

Barriers to Participation

Mistrust:

• Historical exploitation by researchers
• Fear of how data will be used
• Skepticism about benefits
• Power imbalances

Practical Barriers:

• Language and literacy
• Time constraints (work, family)
• Transportation and location
• Documentation status concerns
• Lack of childcare

Cultural Factors:

• Privacy concerns
• Stigma about discussing certain topics
• Unfamiliarity with research process
• Preference for personal relationships

Structural Issues:

• Researchers lack connections to community
• No community partners
• Insufficient funding for culturally appropriate methods
• Academic timelines don't match community rhythms

Part 2: Core Principles of Community-Engaged Research

1. Partnership and Shared Power

What It Means:

• Community members as co-researchers, not just subjects
• Shared decision-making at all stages
• Equitable distribution of resources and credit
• Recognition of community expertise

In Practice:

• Community advisory boards
• Community co-investigators
• Memorandums of understanding
• Transparent communication
• Fair compensation for time and expertise

2. Addressing Community-Identified Needs

What It Means:

• Research questions come from community priorities
• Studies designed to be useful
• Results address real problems
• Action-oriented outcomes

In Practice:

• Listening sessions before designing study
• Community needs assessment
• Alignment with community goals
• Commitment to sharing findings in accessible formats

3. Building on Community Strengths

What It Means:

• Asset-based, not deficit-based
• Recognition of cultural knowledge and resilience
• Honoring existing systems and structures
• Strengths as foundation for solutions

In Practice:

• Document resilience and resistance
• Identify cultural protective factors
• Partner with existing organizations
• Highlight community wisdom

4. Culturally Congruent Methods

What It Means:

• Methods appropriate for culture and context
• Linguistically accessible
• Respect for cultural norms
• Flexibility and adaptation

In Practice:

• Translated materials and bilingual staff
• Face-to-face recruitment when valued
• Appropriate venues and timing
• Cultural adaptation of measures
• Multiple data collection methods

5. Sustainability and Capacity Building

What It Means:

• Research builds lasting community capacity
• Skills and resources stay in community
• Sustainable beyond initial project
• Community ownership of findings

In Practice:

• Training community members as researchers
• Providing resources and infrastructure
• Long-term partnerships
• Supporting community-led follow-up

Part 3: Successful Models

Case Study 1: Sikh Immigrant Mental Health Study

Context:Researchers wanted to understand mental health needs of Sikh immigrants but faced low participation in past studies.

Community-Engaged Approach:

• Partnership with Gurdwaras and Sikh organizations
• Community advisory board guided all decisions
• Bilingual Punjabi-speaking research staff from community
• Recruitment through trusted community gatekeepers
• Culturally adapted measures and protocols
• In-person interviews at convenient locations
• Purposive sampling to ensure diverse representation

Results:

• High participation and completion rates
• Rich, nuanced data
• Community trust in process
• Findings used for advocacy and program development
• Ongoing partnership for follow-up work

Key Success Factors:

• Deep community partnerships
• Cultural and linguistic congruence
• Community benefit clearly articulated
• Patience with timelines
• Respect for community knowledge

Case Study 2: South Asian Tobacco Use Research

Context:Need for data on tobacco use patterns in South Asian Americans for public health planning.

Community-Engaged Approach:

• Collaboration with multiple South Asian organizations
• Community advisors helped design survey
• Culturally appropriate recruitment materials
• Multiple language options
• Diverse recruitment strategies (community events, organizations, word of mouth)
• Clear communication about purpose and use of data

Results:

• Successfully recruited diverse South Asian sample
• Data on tobacco use by ethnicity, gender, generation
• Information used for culturally tailored interventions
• Publications co-authored with community partners
• Resources for community organizations

Key Success Factors:

• Clear practical benefit for community
• Diverse partnerships across South Asian groups
• Linguistic accessibility
• Respect for diversity within South Asian populations
• Commitment to disseminating findings accessibly

Part 4: Practical Strategies for Recruitment and Engagement

Building Trust

Before Recruitment:

• Establish relationships with community organizations
• Attend community events
• Provide service or support (not just extracting)
• Be visible and present
• Listen to community concerns

During Recruitment:

• Personal invitations more effective than flyers
• Trusted community members as recruiters
• Clear explanation of purpose and benefits
• Transparency about risks and time commitment
• Respect for those who decline

Culturally Congruent Methods

Language:

• Materials in community languages
• Professional translation (not just Google Translate)
• Back-translation to ensure accuracy
• Bilingual staff for interviews/surveys

Setting:

• Convenient, trusted locations
• Religious or community centers
• Homes if culturally appropriate
• Avoid institutional settings that create discomfort

Timing:

• Work around community schedules
• Consider religious observances and holidays
• Flexibility with appointments
• Provide childcare if needed

Compensation:

• Fair payment for time
• Gift cards to useful stores
• In-kind support
• Community benefit (e.g., donation to organization)

Inclusive Sampling

Purposive Sampling:Rather than random sampling, intentionally recruit to ensure diversity:

• Different ethnicities (Indian, Pakistani, Bangladeshi, etc.)
• Various languages
• Range of ages
• Socioeconomic diversity
• Immigration generations
• Geographic distribution
• Gender diversity
• LGBTQ+ inclusion when relevant

Part 5: Ethical Considerations

Informed Consent

Beyond Signing a Form:

• Ensure true understanding
• Explain in preferred language
• Allow questions and concerns
• Ongoing consent (can withdraw)
• Clear about data use and protection

Special Considerations:

• Those with limited English proficiency
• Those uncomfortable with institutions
• Immigration status concerns
• Mental health research (capacity to consent)

Confidentiality and Privacy

Protecting Participants:

• De-identified data
• Secure storage
• Limited access
• Aggregate reporting (no individual identification)
• Special care with small communities

Cultural Privacy Concerns:

• Topics that carry stigma (mental health, sexuality)
• Potential for community judgment
• Family and community reputation
• Reassurance and protection

Power Dynamics

Researchers Have Power:

• Access to resources
• Academic credentials
• Publishing authority
• Control over findings

Addressing Imbalance:

• Share power in decision-making
• Compensate fairly
• Credit community expertise
• Give back control over data/findings
• Support community-led dissemination