Research In Practice Blog
When researchers develop and evaluate new approaches to care, the most important experts are often the people who will use them. Families, clinicians, educators, and community members bring perspectives that can help ensure research addresses real-world challenges and leads to meaningful change.
That principle guided the Partnering to Achieve School Success (PASS) Study, a collaborative effort, co-led by Jennifer Mautone, PhD, ABPP, a psychologist, associate professor of psychiatry and pediatrics, PolicyLab and Clinical Futures expert, and director of the Pediatric Research Consortium (PeRC), and Thomas Power, PhD, ABPP, director of the Center for Management of ADHD at Children's Hospital of Philadelphia (CHOP), along with their colleagues, to improve access to evidence-based behavioral treatment for children with attention-deficit/hyperactivity disorder (ADHD). Throughout the study, researchers partnered with caregivers, primary care clinicians, behavioral health clinicians, and educators to help shape the research and ensure it reflected the needs of families.
Addressing Barriers to ADHD Care
Behavioral interventions are recommended as an important part of ADHD treatment. Yet families often face barriers to accessing care, including transportation challenges, scheduling conflicts, childcare needs, financial constraints, and limited availability of services in their communities. These barriers can disproportionately affect families from historically underserved populations.
Researchers recognized that addressing these challenges would require more than developing a new program. It would require understanding the lived experiences of the families, educators, and clinicians who navigate ADHD care every day.
Building a Research Partnership
The PASS Study was designed around engagement of interest holders from the beginning. Rather than asking for feedback only after key decisions were made, researchers involved partners throughout the project's planning, implementation, and dissemination phases.
The project was overseen by a leadership team and advisory board. Both groups included:
- Family caregivers of children with ADHD
- Primary care pediatricians
- Behavioral health clinicians
- Educators and school partners
- Research staff and investigators
Together, these partners provided guidance on study design, materials, recruitment strategies, communication approaches, and plans for sharing results with families and communities.
Family Voices Shaped the Research
Parents and caregivers played a central role in helping researchers understand what families need from ADHD services and research participation.
"I learned about PASS after our involvement in behavioral parent training with the ADHD Center, and I was happy to be involved. I think being a family caregiver of a child with ADHD helped me to understand some of the challenges and feelings other family caregivers might experience, like parenting guilt, feeling overwhelmed, and trying to balance everything for the child with ADHD and the rest of the family. I was able to bring that perspective, being sensitive to some of the barriers and challenges the families in the study might experience, and I was able to contribute to study procedures, newsletters, and videos," said a mother of elementary aged child with ADHD.
Their feedback influenced how information was presented, how family experiences were measured, and how study materials could better reflect diverse perspectives. Caregiver partners also encouraged researchers to consider issues such as cultural responsiveness, trust, and the daily demands faced by families managing ADHD and other responsibilities. These insights helped ensure the study remained focused on outcomes that matter most to families.
Learning From Schools and Clinicians
Educators offered valuable perspectives on how ADHD affects children in classroom settings and how schools can support students and families. Their input became particularly important as schools navigated the ongoing effects of the COVID-19 pandemic, staffing challenges, and growing behavioral health needs among students.
Pediatricians and behavioral health clinicians also helped shape the study by identifying practical ways to integrate support into routine care. Their experience working directly with families helped researchers design approaches that could be implemented in real-world clinical settings.
Expanding Access Through Community Partnership
One of the study's goals was to improve engagement among families who have historically faced barriers to care and research participation. To support this effort, the team worked to create culturally responsive materials and improve outreach to diverse communities, including Spanish-speaking families.
The study also incorporated Community Health Partners, who helped families navigate resources, stay connected to services, and address challenges that could interfere with participation. This role strengthened connections between families and the care team while helping researchers better understand community needs.
Looking Ahead
The PASS Study demonstrates how meaningful engagement of interested parties can strengthen pediatric research. By partnering with caregivers, educators, clinicians and community members throughout the research process, investigators developed a study that was more responsive to the realities families face and more likely to generate solutions that can improve care.
As health care systems continue to seek ways to improve outcomes and reduce disparities, the PASS Study offers an important example of what can happen when families and communities are treated as partners in research throughout the research lifecycle rather than participants alone.
Alex S HoldawayThomas J PowerAmala DavisColette DesrochersErica EvansZia GajaryJames P GuevaraSiobhan LeavyDanah RiosBillie Schwartz AbrahamKatherine BevansJennifer A Mautone; A Community-Engaged Research Partnership to Address Behavioral Health Inequities in ADHD Care. Pediatrics 2026; e2026076849. 10.1542/peds.2026-076849