Background: Adolescent health research is largely inaccessible to the adolescent and young adult (AYA) patient community. Traditionally, health research is housed within universities and is shared through research journals and conferences targeted to researchers and healthcare professionals. The public faces barriers in using primary sources of knowledge because they require training to find and navigate, are often expensive, and may be littered with jargon. Because AYAs are not able to easily learn about up-to-date information, they are disempowered from making informed healthcare decisions and from advocating for research that is meaningful to them. As a step toward a solution, AYAs must be incorporated into the research process as active members of study teams to ensure these gaps and their priorities are addressed.
Proposed Solution to the Problem: The primary aim of this project is to build capacity for adolescents’ and young adults’ involvement in research by developing an Adolescent and Young Adult Leadership Research Council. AYA council members will be trained and ready to collaborate as key partners on patient-centered research teams. This AYA Leadership Research Council will be a step toward changing who is and who can be involved in the larger research conversation.
- Convene 12 diverse AYAs with chronic conditions who are motivated to become advisors on patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER)
- Educate and train AYA council members on how research is conducted, what the most prominent adolescent health issues are, and how to share their experiences to influence ongoing research projects
- Empower the AYA Leadership Research Council to create materials about adolescent health research and share via an accessible platform tailored to their AYA patient communities
Activities: AYA council members will learn about research through interactive experiences including: an initial retreat to explore the value of patient partnership in research, facilitated workshops to practice communication/advocacy skills, and discussions with guest speakers about adolescent health research and how to share findings with their AYA peers. In addition, AYA council members will use Photovoice and storytelling to develop dissemination materials tailored to educate and engage their AYA peers in discussions about research that is relevant to their health.
Projected Outcomes and Outputs
- Blueprint for educating and sustaining an AYA Leadership Research Council
- Guidelines to maximize collaboration between researchers and AYAs
- Platform to share research findings with AYA patients
Patient and Stakeholder Engagement Plan: This project was designed from patients’ ideas, will be implemented by patients, and is intended to elevate patient voices to make research more accessible for patients.
Project Collaborators: The project team selected collaborators who strongly emphasize patient expertise and the value of patient partnerships, such as the Adolescent Health Initiative (AHI) and The Adolescent Champion Teen Advisory Council (TAC TAC). Also, several researchers and experts have committed to being guest speakers in the training of the AYA Leadership Research Council.