‘Co-production’ in research is operationalized as collaboration between people with lived experience (PLE), local and regional health care providers, researchers, and/or funding agencies to ensure that the science generated is relevant, applicable, and beneficial to the PLE and/or family/care providers.1 Through reciprocal relationships, PLE together with scientists/researchers, and healthcare and other community supporters work together throughout the research process. Co-production has potential to enhance shared decision-making, optimize care, develop evidence-based science, and ultimately the lives and well-being of people with cerebral palsy (CP) and childhood-onset disabilities across the lifespan. Cohen suggested that the ‘community’ of children/persons with cerebral palsy and/or childhood-onset disabilities can be described building on Sandler's updated 2025 ‘Ring Theory’.2, 3 The Ring Theory suggests that those who are in crisis are at the center of a set of social rings. In a crisis, the people closest to or living with the person in crisis would fit in the first ring, while others fill the outer rings. The people in the inner rings can share issues or the lived experience of the crisis with those in the outer rings. Thus, these rings of community can be applied to the lived experiences of people with CP or childhood-onset disabilities, whom, at the center are the highest priority. The ring/community closest to the PLE would be parents/family/caregiver/partner or spouse who share day-to-day life. Surrounding them are the therapists, teachers, aides, sport coaches, faith groups, and activity/sport teams who interact with the PLE outside the home and less frequently. Within the next ring/community are the regional healthcare providers (physicians, therapists, nutritionists, etc.) who support them sporadically. Furthest from the PLE are researchers, clinical or lab scientists, industry and funding agencies with whom interaction is less often. Each successive outer ring/community brings unique perspectives, influence/interest of what is important or meaningful for the PLE. A dynamic reciprocal exchange occurs through engagement of all the rings/communities in co-production of research. Co-production of research knowledge has been described as collaboration of all these unique communities in three broad processes of (1) planning, (2) doing, and (3) sharing (https://iod.unh.edu/equipped-engage/tools-research-stage). For example, co-production of planning what to study was reported by Gross et al.4 Within the Cerebral Palsy Research Network (CPRN), the community of authors co-produced educational and facilitated online Delphi survey processes to develop the top 16 concepts of a patient-centered research agenda for CP. Of note, the top 16 topics reported in the agenda included problems of body function and impairment, functional activity, participation, and quality of life throughout the lifespan. Building on this research agenda, co-production has generated knowledge related to meaningful CP specific areas of impact such as the experiences of living with the movement disorder dystonia and/or functional decline with aging. Co-production in doing or implementing research study activities is found in participatory research methods (photovoice) describing barriers and facilitators for physical activity.5 An exemplar of sharing knowledge through co-production is found in the ‘Cerebral Palsy Tool Kit: From Diagnosis to Understanding’ for children and care providers of persons with CP (https://cprn.org/our-toolkits/). Join the rings of community surrounding persons with CP and childhood-onset disabilities at the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), 80th Annual Meeting, 27th to 30th September 2026 in Philadelphia, PA. With the theme of ‘80 years of Science: Rooted in Brotherly Love & Lifelong Community’, participants will co-produce in dissemination of cutting-edge science. Including PLE, the conference community will gather, listen, learn, and build evidence-based knowledge to enhance the lives of those with childhood-onset disabilities for the next 80 years or beyond. ‘Nothing for us without us’! Not required.
Kristie Bjornson (Tue,) studied this question.