Research Snapshot – Levels of Engagement of South Asian Participants in Health Research: Effectiveness of Community-Based Research (CBR) Framework (2024) 

What is this Research About? 

This study was conducted at the Equity, Diversity, and Inclusion lab of Access Alliance MHCS led by Dr. Akm Alamgir in collaboration with the academic and students at the University of Toronto. It identifies key challenges of research on South Asians’ health and underscores the importance of adopting the Community-Based Research (CBR) framework. CBR supports conducting equity-informed studies where community members participate across the entire research curriculum as co-researchers and research participants. 

What Do You Need to Know? 

South Asian communities face unique health challenges including higher rates of cardiovascular disease, diabetes, and certain cancers compared to other populations. There is significant heterogeneity within South Asian subpopulations regarding cultures, dietary habits, and health beliefs. However, this diversity is too often ignored when South Asian communities are studied.  

Historical colonial protocols and less-transparent research practices have created mistrust among minority populations, leading to reduced participation in health research. Research challenges include trust, lack of transparency in the research process, resulting in a lack of perceived benefits to the community. 

What Did the Researchers Do? 

Researchers conducted a scoping review to identify the extent or gap in the current literature and to propose future directions to bridge the gap. 

The review included full-text, peer- reviewed publications that focused on South Asians or other similar ethnic minorities. Studies were eligible if they involved co-researchers over the age of 18, included participants at various stages of health research, and discussed frameworks and strategies for inclusion. 

What Did the Researchers Find? 

Many health research studies demonstrate inconsistent community engagement. A recurring theme is that participants are only involved in the early stages of research. There tends to be limited participant involvement throughout entire research projects. A few studies have extensively incorporated participants as co-researchers. 

A small number of studies addressed diversity and equity using diverse methodologies beyond Westernized frameworks, leading to more insight. Most successful methods involve adhering to culturally pertinent practices and applying collaborative, inclusive and meaningful methods of community engagement.  

The democratic and inclusive model of CBR using an Asset Based Community Development (ABCD) Framework effectively engages community members as peer researchers throughout the research process and reports back to the community to overcome challenges. CBR approaches help to address inequities and power dynamics. However, few studies incorporate CBR in their approach.  

How Can You Use This Research? 

Establish a foundation of community involvement, including participants as collaborative co-researchers, throughout all phases of the research process. Community engagement increases participation, recruitment, and retention due to enthusiasm expressed by the community members involved. 

Commit to, establish, and follow through on cultural sensitivity and appropriate cultural norms in the research process. Including ethnoreligious community facilitators can increase the level of trust between participants and researchers. Address concerns about immigration status, potential side effects, and religious beliefs that may cause hesitancy. 

Including participants as research collaborations creates a positive perception of research, creating a sense of responsibility and collaboration, leading to a broader appreciation for the role of research in promoting the common good. 

Address inequities and power dynamics between researchers and communities to ensure that all voices are heard and valued, enhancing the overall effectiveness and inclusivity of the research. 

Utilize the Asset Based Community Development Framework to engage community members as peer researchers throughout the research process. Taking a CBR approach transforms research to be more impactful, generalizable, and beneficial to the community. 

Academic Researchers:  

• Should adopt CBR framework for equity-informed studies. 
• Need to incorporate culturally significant research frameworks. 
• Should ensure community participation throughout the research process. Incorporate community members in:  
  • Early stages of research design 
  • Development of research questions 
  • Study protocols 
  • Data collection 
  • Analysis and interpretation 

Tips for Practical Implementation 

• Develop and implement equity principles specific to South Asian health research.  
• Take a multifaceted approach that emphasizes inclusivity and diversity. 
• Improve communication between academia and the larger community. 
• Engage participants as collaborative co-researchers in all phases of research. 
• Use ‘insider-outsider’ roles to gain broader perspectives on recruitment strategies and overcome technical barriers. Train researchers to incorporate culturally significant frameworks. 
• Shift from conventional research paradigms to more inclusive models. 

Healthcare Practitioners:  

• Can use findings to improve engagement with South Asian communities. 
• Should consider cultural sensitivities in healthcare delivery. 

Policy Makers:  

• Can develop more inclusive research policies. 
• Should support initiatives that promote community engagement in research. 

Study authors and journal/book name 

Authors: Akm Alamgir, Pretha Roy, Franco Taverna 

Publication: Levels of Engagement of South Asian Participants in Health Research: Effectiveness of Community-Based Research (CBR) Framework Journal of Scientific Research and Reports Volume 30 [Issue 9] (original link) 

Related Access Alliance Activities 

Our Community-based Research Approach 
This page provides an overview of our approach to Community-based research along with hands-on CBR tools for making research inclusive, empowering and equity driven. The key criteria for community-based research (CBR) are that the agenda originates in the community, is done by the trained members of the community (peer research model), and the benefit of the research is visibly implemented for making a change in the community. CBR is a transformative model of knowledge production grounded in community, collaboration, and positive change. 

Building Capacity for Equity-Informed Planning and Evaluation 
The overall aim of this project is to build organizational level knowledge, commitment and capacity to routinely use a health equity framework and evidence geared at overcoming systemic inequities in healthcare access, healthcare quality and health outcomes.