6 reasons to include underrepresented voices in research about their community

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Rima Nakkash, interim Chair of the Department of Global and Community Health in George Mason University’s College of Public Health, convenes a youth council to inform vape prevention methods targeted towards LGBTQ+ college students in Virginia. 

CPH Youth Council at ARIE
Researcher Rima Nakkash and members of the Youth Council presented at George Mason University’s Access to Research and Inclusive Excellence (ARIE) conference in March 2024 about “Engaging Virginia LGBTQ+ Youth to Inform Vaping Prevention and Policy Initiatives.” 
For names of those pictured, see below.

 

Engaging marginalized and hard-to-reach populations has been an ongoing challenge in public health research. The LGBTQ+ community is a salient example of one, as they only make up 5.5% of the adult population in the United States. Uninclusive clinical trials and medical settings, coupled with fear and anxiety around disclosing their identities leads to LGBTQ+ people being underrepresented in public health research. When underrepresented communities and their health needs are centered in research, they are more receptive to intervention methods meant to help their community. 

To this end, Rima Nakkash, interim Chair of the Department of Global and Community Health in George Mason University’s College of Public Health, studies effective vape and e-cigarette prevention methods for LGBTQ+ college students in Virginia and includes members of the LGBTQ+ community to improve the research and benefit the participants. 

“Given the current knowledge and evidence we have about increased prevalence of vape use among LGBTQ+ youth compared to their heterosexual counterparts in Virginia, it is important that we move beyond defining the problem to coming up with solutions/interventions to benefit this population of young adults,” said Nakkash. “Engagement gives voice to LGBTQ+ youth, makes the approach more relevant, and increases ownership of interventions.” 

The research team, including PhD student Omolayo Anjorin and recent MPH graduate Archana Vardhan, recruited three George Mason students and three alumni to form the study’s youth council (YC), who aid the team on devising recruitment and intervention methods targeted towards LGBTQ+ college students. Nakkash has previously and successfully created youth coalitions in past studies, and she knew that implementing something similar for this study would ultimately strengthen her current research and provide benefits to the participants. Here’s how: 

How YC members benefit from participating in the research 

1. Encourages students/alumni to learn about the research process  

“Participating in the youth council is a great way to gain experience in the research process including recruiting, poster design, and presentation of findings, which I think you can never have too much exposure to,” said Rachael King, George Mason alum who holds a master’s in health informatics and lab sciences.  
 
“I found participating in the youth council relevant and directly applicable to my professional goals. I was able to practice analyzing qualitative and quantitative data under the guidance of the faculty and doctoral/master’s students I worked with,” said August Huynh, BS in Community Health student. 

2. Incentivizes students/alumni to engage in current issues they are committed to 

“I joined the youth council because I am interested in addressing health disparities among LGBTQ+ people and bettering their health outcomes,” said Linh Tran, BS in Community Health student. 

“I am pursuing my MA in this topic, so this opportunity felt like a great way to continue to promote what I’m passionate about,” said Lexi McCaffrey, MA in Women and Gender Studies student.

3. Empowers people from the marginalized community that is being studied 

All members of the YC are part of the LGBTQ+ community. Everyone wanted to leverage their education and experience to advocate for the health and well-being of other community members.  
 
“Representation matters, and I am in a place where I can amplify my voice for those who can’t or aren’t comfortable,” said King. 
 
“Oftentimes, research involving queer folk doesn’t involve their perspective, leading to the findings to be not as truly representative as it could be. With a youth council, the participants’ ages matched ours, so any of our insights could be helpful,” said Siri Nikku, BS in Community Health student. 

How the research benefits from engaging the community 

4. Makes research and prevention methods more relevant to the concerned community’s needs 

“It is important that public health interventions are developed following a participatory approach to maximize implementation and adoption by the concerned population,” said Nakkash.  

“A youth council helps bridge the gap that researchers may face with better engagement with those who are closer to these communities so they can be better related to,” said Ethan Terceros, BS Community Health alum.

5. Promotes health equity among understudied and marginalized communities 

Nakkash stresses the importance of giving agency and ownership to marginalized communities who are being studied. Many members of the YC note the disparity in vaping and e-cigarette usage between LGBTQ+ youths and their cisgender and heterosexual peers. “Many reasons for it can stem from factors such as gender/sexuality-based discrimination and higher rates of poor mental health,” Tran said.  

6. Allows valuable community input to shape the direction of research 

The research team consulted the YC on how to best reach other LGBTQ+ college students to recruit them for the study. The YC suggested social media platforms like Instagram and TikTok, which led to an increase in participation in the study. 

Nakkash has found the implementation of a YC valuable, as the lived experiences of young LGBTQ+ people have given her and the researchers insight and input that have changed the research for the better. However, she notes that it is time-intensive and requires commitment from the researchers and youths involved. If researchers are dedicated and confident enough in implementing a youth-centered participatory approach to research, it can be a substantial boon to their findings and strengthen any initiatives and interventions made based on the research findings. 

Faculty and graduate students from Lehigh University and the Eastern Virginia Medical School are collaborating with Nakkash on the project. 

The group photo at the top of the story includes: 

From left to right: GCH student Siri Nikku, GCH student Linh Tran, PhD student researcher Omolayo Anjorin, GCH student August Huynh, principal investigator Rima Nakkash, GCH alum Archana Vardhan, and GCH alum Ethan Terceros.