Allison M Smith,1,2 Sebastian Sachs,1,3 Hannah Rogan,1 Jennifer Lee Christofferson1,2 1Department of Anesthesiology, Critical Care, 2Department of Psychiatry, Division of Psychology 3College of Fine Arts, School of Theatre, Boston University, Boston, MA, USACorrespondence: Allison M Smith, Email Allison.smith@childrens.harvard.eduAbstract: Advancing inclusion in pediatric pain research requires approaches that move beyond recruitment diversity toward authentic partnerships with youth and families whose lived experience can inform scientific rigor, relevance, and ethical integrity. Although patient engagement is widely endorsed, practical guidance for implementing partnerships that are safe, equitable, and sustainable remains limited, especially when working with populations exposed to intersectional marginalization and stigma. In this perspective, we argue that trauma-informed principles provide a critical framework for structuring meaningful patient partnerships in pediatric pain science. In collaboration with our patient partner (co-author, SS), we situate contemporary partnership approaches within their historical foundations in the justice-oriented movements that first recognized lived experience as a form of expertise. We then synthesize evidence describing benefits of patient engagement for research quality, feasibility, and translation, alongside emerging data on benefits for patient partners themselves. We use a case example from our lab to illustrate how patient partners can shape study design, language, recruitment, and ethical safeguards in ways that strengthen methodological and contextual validity. We also examine structural, relational, and emotional barriers that may limit equitable, rewarding participation if not intentionally addressed. In response to these barriers, we propose a partnership framework that links core trauma-informed care (TIC) principles (eg, safety, transparency/trustworthiness, peer support, collaboration, empowerment, cultural responsiveness) to actionable strategies and underlying mechanisms toward authentic engagement. We conclude inclusive partnership practices can help pediatric pain researchers to build collaborations that are ethically grounded, methodologically robust, and amplify the voices and priorities of youth living with pain.Plain Language Summary: Young people living with chronic pain have valuable ideas that can improve research about pain when they are included as partners, not just participants. Working with patient partners can make research studies more useful, relevant, and respectful. However, many researchers are unsure how to build partnerships that feel safe, fair, and supportive, especially for youth who have had negative healthcare experiences. In this perspective, we explain why it is crucial for pediatric pain researchers to ensure their partnerships include diverse perspectives and treat partners as true equals. We describe how patient partners can improve how researchers design their studies, connect with participants, and interpret the information they gather in their studies, and help the findings to be used in patient care. We also talk about how patients benefit from these partnerships, by helping them feel heard, connected, and able to make a difference. Using an example from one of our studies, we show how patient partners help improve study materials, questions asked, and overarching research plans, as well as avoid unintended harm. We review common challenges with partnerships (eg, limited time, unclear roles, burden) and offer practical suggestions for addressing them. These suggestions focus on safety, trust, respect, and making decisions together â all approaches that acknowledge that patients may have had difficult experiences. In sum, thoughtful and inclusive partnerships help make sure that pediatric pain research reflects the real needs and priorities of the young people it aims to serve.Keywords: pediatric pain, patient partnerships, lived experience, trauma-informed care, inclusivity, equity
Smith et al. (Fri,) studied this question.