“A WIN-WIN SITUATION”: PERSPECTIVES OF PATIENT AND FAMILY INVOLVEMENT IN THE 2022 KIDGEN SYMPOSIUM
Noa Amir1, NICOLE SCHOLES-ROBERTON2, KELLI OWEN3, HUGH McCARTHY1, ALLISON JAURÉ1 1The University Of Sydney, Camperdown, NSW, Australia2Flinders University, Alice Springs, NT, Australia3The University of Adelaide, Adelaide, SA, Australia
Abstract
Aim: To describe patient and professional perspectives on patient and family involvement in the KidGen Symposium.
Background: Recognising the value of patient and family engagement in all stages of research has prompted efforts to involve patients, their families and advocates as active collaborators and contributors in research activities including scientific conferences. There is, however, limited evidence on experience, impact and implementation challenges to enhance patient and family involvement in scientific conferences.
Methods: Semi-structured interviews were conducted with 7 patients/family members, and 9 health professionals, and industry representatives who attended the 2022 KidGen symposium. Interviews were recorded and transcribed verbatim and analysed thematically.
Results: Three major themes were identified: shifting the paradigm to enrich learning (grounding science in family narrative, recognising expertise through generational lived experience, amplifying patient voice, the reality of underrepresented communities), enabling access to and involvement in research (challenging ownership of knowledge, demystifying research to address misinformation and mistrust, empowerment through interpersonal connection, distilling key messages without diluting scientific rigor), and sparking innovation and motivation (negotiating priorities for research and care, fostering hope for future generations through shared knowledge).
Conclusions: Patient and family involvement at the KidGen symposium enriched scientific learning, inspired new perspectives, and enabled bi-directional knowledge exchange to broaden research agendas and re-align research priorities responsive to patient needs. Access to and involvement in research presented opportunities for broader knowledge dissemination and development of patient-researcher partnerships.
Biography
Noa Amir is a paediatric nephrologist at the Children’s Hospital at Westmead and PhD candidate at the University of Sydney. Noa’s academic interests include patient-centred research approaches to improve care pathways for people living with genetic kidney diseases.