OU Student at Helm of New Patient-Centered Research Push

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NORMAN, OKLA. - University of Oklahoma graduate student Ann Gettys is leading a major national initiative to transform research on rare lung diseases, thanks to a new funding award to the Children’s Interstitial and Diffuse Lung Disease (chILD) Foundation. Gettys, a Learning Experience and Design Technology (LEDT) student in the Jeannine Rainbolt College of Education, serves as project lead for a two-year effort funded through the Eugene Washington PCORI Engagement Award Program. The project aims to build the first sustainable, patient-centered comparative clinical effectiveness research (CER) agenda for chILD, ensuring that patients and families play a central role in shaping future studies.

The new award supports the development of a nationwide collaborative research community involving patients, caregivers, clinicians, and scientists, with Gettys guiding the design, communication strategy, and engagement framework. Her work emphasizes accessible, technology-supported methods to elevate patient perspectives.

“This project is a monumental step forward in the future of research for Children’s Interstitial and Diffuse Lung Disease—placing the voices of patients and caregivers at the center as we co-create a meaningful and actionable CER Research Roadmap,” said Gettys.

Children’s Interstitial and Diffuse Lung Diseases encompass a diverse group of rare disorders that affect individuals from infancy through adulthood. Because these conditions vary widely in symptoms, severity, and long-term outcomes, developing a research roadmap that reflects patients' and families' lived experiences is essential. Gettys’ leadership brings together these voices with a national network of medical experts who are committed to improving health outcomes through patient-centered CER.

Building Capacity for Patient-Centered Research

The project, Building Capacity for Patient-Centered CER on Rare Lung Disease, focuses on five primary objectives:

1. Build a Patient-Centered Research Community including patients, caregivers, clinicians, and researchers across the full chILD spectrum.
2. Train community members to participate as equal partners in patient-centered CER.
3. Identify and prioritize research questions and outcome measures that reflect the needs and priorities of individuals living with chILD.
4. Establish sustainable engagement strategies to support future CER efforts.
5. Disseminate the CER agenda and engagement strategies to the rare lung disease community and partner organizations.

These objectives align closely with the LEDT program’s emphasis on human-centered engagement, instructional design, and the use of technology to improve communication, all skills Gettys is applying directly in her work.

OU Graduate Training at the Center of National Impact

Gettys’ role in leading such a complex national project demonstrates the growing impact of OU’s Jeannine Rainbolt College of Education in preparing graduate students to influence policy, practice, and research far beyond traditional educational settings. The LEDT program equips students with tools for designing meaningful learning and communication experiences—skills that seamlessly translate to medical communication, patient advocacy, and research engagement.

Her work offers a powerful example of how OU graduate students are applying instructional design principles to real-world challenges, creating more accessible information pathways for families navigating complex medical conditions.

The project is now underway, with stakeholder interviews and focus groups in progress. These early conversations are gathering insights from families, adults affected by chILD, clinicians, and researchers representing a broad spectrum of experiences and needs.

The initiative involves a multidisciplinary, multi-site team that includes experts from Boston Children’s Hospital, St. Louis Children’s Hospital, Seattle Children’s Hospital, and Northwell Health.

As the project moves into its subsequent phases of training, agenda development, and dissemination, Gettys and her team aim to create a lasting infrastructure that supports patient-centered research in rare lung disease for years to come. Their work will not only guide future CER studies but also strengthen communication between families and health professionals.