Giving youth a voice in pediatric health research
"We’re hoping to ensure research respects the ability of kids to assent to participate in research, even if they are not old enough to give consent.”
Editor's note: This article from Mayo Clinic's Advancing the Science describes efforts and explains the importance of getting underrepresented populations into clinical trials and other medical research.
Children are underrepresented and understudied in clinical trials, limiting the number of children-focused research studies and the overall advancement of pediatric medicine. To address this, Mayo Clinic researchers established a first-of-its-kind Pediatric Advisory Board to engage youth as partners in research and enhance pediatric research participation. A description of the board and results of interviews with its youth members were recently published online in the Journal of Clinical and Translational Science.
“We started the Pediatric Advisory Board because we needed a better way to engage pediatric populations in research that directly impacts them,” says Christi Patten, Ph.D. , Mayo Clinic psychologist and behavioral health researcher. “Issues such as mental health, nutrition and vaping impact children in unique ways that can be very different from how they impact adults.”
The Pediatric Advisory Board is composed of individuals ages 11 to 17 who were invited to join the group through existing relationships, referrals, and community partners. Upon joining, the board members receive training in the research process; research ethics; and issues relevant to “ special populations ” in research, such as children and older adults. Researchers specializing in pediatric research are invited to present their studies to the Board and receive feedback at quarterly meetings.
Special populations in research:
"Special populations” are those which have been historically underrepresented and underserved in health research. The Integrating Special Populations Program at Mayo Clinic aims to ensure that people from these groups have the opportunity to engage, as stakeholders and participants, in research that addresses their health concerns and improves the health of their communities. Children and adolescents are treated as a “special population” in research because they are considered vulnerable due to their age and because their viewpoint is underrepresented.
The idea of a community group to advise researchers is not new. Community Advisory Boards are common in research, particularly in areas such as community-engaged research and individualized medicine. Typically comprised of adult patients or community members, they advise investigators on adult-focused research projects and provide feedback on the risks and benefits to participants.
“We’ve been successful with existing Community Advisory Boards in addressing the health needs of communities and fostering two-way conversations between investigators and community members,” says Dr. Patten. “To our knowledge, however, this is the first Community Advisory Board featuring adolescent voices for pediatric research in clinical and translational science.”
Benefits to researchers
The Pediatric Advisory Board members who were interviewed unanimously agreed that the board brings a needed point of view to researchers. By providing feedback on participation and involvement of youth in research, researchers can gain insight into the best way to design and conduct studies and disseminate information to a pediatric audience. In addition, the board provides ideas on ways to increase awareness of research studies for adolescence, such as locations to advertise and how to direct research recruitment information to adolescents’ interests rather than their parents.
“Pediatric research volunteers don’t always have a say in their participation. That’s usually up to their parents,” says Megan Allyse, Ph.D. , a biomedical ethics researcher. “Through the Pediatric Advisory Board, we’re hoping to ensure research respects the ability of kids to assent to participate in research, even if they are not old enough to give consent.”
Mayo Clinic has several community-based advisory boards and councils , but this is the first time Mayo has solicited advice from youth in this type of setting. There is a thorough vetting process for researchers who want to present to the board. They are required to meet with the Pediatric Advisory Board coordinator to ensure their research is within the scope of the board. Presentations are previewed before the session and limited in length. And if the content is determined to be too difficult, the researchers are asked to resubmit to the coordinator prior to presenting to the board.
“Given the age of the members, we need to be sure the research is not only relatable to an adolescent population, but that it is understandable to all members of the board,” says Miguel Valdez Soto, Pediatric Advisory Board coordinator. “Once this is established, an invitation is extended to present at a board session.”
Making a positive impact
Researchers see this as an opportunity to design studies that represent health concerns of youth based on their input, all while increasing awareness of pediatric research and promoting interest in youth participation in research. Through interviews following their participation, members indicated that the Pediatric Advisory Board was beneficial in bringing a new point of view to researchers who conduct pediatric studies and agreed there is a need to engage youth in research that directly affects their population.
There is another, perhaps inadvertent, opportunity for initiatives like the PAB — to increase early exposure to science and medicine, creating a pipeline for the next generation of scientist and health care workers. Parents of the board members, through a survey, said that the PAB was a way for their kids to engage in critical thinking and gain confidence within a safe a regulated environment.
“While the PAB members in this study were both gender and racially diverse, this is not a reflection of the reality of science, technology, engineering and math (STEM) where minorities are underrepresented,” says Dr. Allyse. “These types of initiatives may help address some of these disparities by increasing early exposure to science and medicine for the next generation of diverse biomedical researchers.”
And it looks like this is a step in that direction. Participants reported improved knowledge about science and research and a newfound understanding and interest in science and medicine.
The Pediatric Advisory Board continues to meet quarterly, and with the pandemic the board has met virtually via zoom. In the future, researchers are looking at ways to expand to Mayo Clinic in Arizona and Florida. In addition, they’re exploring how youth can take more active roles in the entire research process, such as initiating their own research projects to address health needs in their communities.
The original article can be found at https://advancingthescience.mayo.edu/2021/05/06/giving-youth-a-voice-in-pediatric-health-research .