Research Heroes: How the Harvey Family Helps Build Healthier Futures

The Harvey Family

By Jillian Rose Lim

Editor's Note: Without the generosity and dedication of families, patients, and members of the public who take the time to be a part of research, many of our scientific advances would not be possible. This occasional blog series, in partnership with the Recruitment Enhancement Core (REC) at CHOP, features the stories of our research heroes who have participated in studies or our Research Family Partners program.

Supporting science, staying current on research, and (in at least one case) spending the day eating chicken nuggets while watching movies, are just some of the reasons why the Harveys, a family of six, participate in research at Children's Hospital of Philadelphia.

Unlike previous Research Heroes featured in this series, the Harvey children don't join studies because of a particular condition or disease for which they seek treatment. Instead, 14-year-old Judah, 12-year-old Leah, 9-year-old Levi, 6-year-old Naomi, and their mom, Bethany, are what researchers call "healthy volunteers" — a different, but nonetheless, critical part of research at CHOP.

"We learn a lot as we're doing it, and we know that we're helping researchers understand diseases or development further," Bethany Harvey said. "And it's fun. The children have been exposed to different things that many other children who don't have serious health issues have never experienced, like getting an MRI."

Healthy volunteers provide valuable information for investigators to learn about the development and function of healthy bodies. They also can act as control groups that help study teams assess the effectiveness of a treatment by establishing a baseline for "normal."

Bethany additionally participates in CHOP's Research Family Partners program, where she meets with investigators to help design studies that effectively incorporate the "voice" of families.

"I would definitely encourage other families to participate in research," Bethany said. "As the healthy control part of the study, my children help researchers observe, for lack of a better term, the 'normal' development of children to compare it with children who have a certain disease."

Bethany adds that by coming to CHOP, the children also have learned about different careers in medicine, and Judah has even expressed a little interest in becoming a paramedic.

Joining Studies as a Healthy Volunteer

Judah and Leah Harvey wear blood pressure monitors at home for a research study.

One of the family's first studies was hosted by the Healthy Weight Program. Judah, then 8 or 9-years-old, spent the day at CHOP for his breakfast, lunch, and dinner. With another participant, Judah chose from a variety of meal options and then answered questions about why he made that selection. The questionnaires helped researchers gather information about children's food preferences to help inform effective healthy weight interventions.

"Judah thought it was great because he just got to eat chicken nuggets and watch all these movies," Bethany said.

In the years to come, Bethany and her children became frequent visitors to CHOP for research about a whole range of topics, including studies about sleep and heart function.

For one of the studies, the two oldest children, Judah, and Leah, spent a day at CHOP to get a metabolic evaluation and then monitored their blood pressure at home every hour for 24 hours.

"That was probably the most intense study," Bethany said. "But I remember afterwards, Leah was like, 'That was so cool. Mom, can we do that one again?'"

Participation has allowed the family to keep up with the ever evolving ideas our researchers learn about the developing body.

"I guess you could read the information in a textbook, but participating as a real sample for the population makes [the information] so much more personal," Bethany said. "For example, we have this understanding about a child's cardiovascular system from 50 years ago, but when we study it now, that knowledge has changed. And it's wonderful to be a part of that — you get to ensure your understanding is up to date and accurate, but also it helps other children who are struggling with a terrible illness." 

Partnering With PIs

After participating in studies for some time, Bethany joined CHOP's Research Family Partners Program around 2020. Due to COVID and the family's relocation to Montana, she and other members of the program meet with a study team or investigator monthly over video calls.

Parents in the Family Partners program assist study teams with their research design:

• helping to write the community engagement portion of grant proposals
• recruiting, training, or supporting families
• providing advice and experiences that help incorporate the patient and family voice in research
• offering feedback about every stage of research including how to disseminate findings to the community.

Bethany recently worked on a sleep study led by Ariel Williamson, PhD, formerly a psychologist and Assistant Professor in the Department of Child and Adolescent Psychiatry and Behavioral Sciences at CHOP and now an Assistant Professor at the Ballmer Institute for Children's Behavioral Health at the University of Oregon. The study, "Implementing Evidence-Based Behavioral Sleep Intervention in Urban Primary Care Sleep," recruited parents and families in the Research Family Partners program who had a child with sleep difficulties or who received treatment through CHOP's primary care network. The parents acted as an advisory committee, meeting several times a year to review the study's progress and make recommendations on how to adapt the intervention to participant feedback.

"Bethany and the family partners that I have had the privilege to collaborate with are essential for my patient/family-centered research," said Dr. Williamson, who continues to work with the Family Partners Program as a CHOP affiliate. "I have learned a great deal about every aspect of research—from the questions we test to the way we administer study measures—from Bethany and the family partners group. At this point I cannot imagine doing research without incorporating family partners, as they provide such crucial perspectives about pediatric patients, their families, and the broader social and environmental contexts in which they live."

"It's fun to be a part of that and see the study progress over time," Bethany said. "We helped with editing a script for a video that they wanted to create about a child going in for a sleep study and talking through what that would look like. So a child would watch that video before going in for a sleep study and better understand what's going on."

While the Harveys now live outside of Philadelphia, Bethany said she will occasionally see emails about research studies pop up and misses the opportunity to participate in person. Nevertheless, she continues on as a Research Family Partner virtually.

"I really appreciate the PIs who come and present their research to us and make us feel valuable," Bethany said. "[Parents] aren't necessarily educated on genetics or whatever the research is about, but the study teams truly value our opinions and make us feel like we are a very valuable part of research and the team."

Are you interested in participating in research at CHOP? Find a study to participate in through our Research Discovery Finder.