Research Partners with Lived Experience Stories from Patients and Survivors

This book aims to foster collaborations between patients who have intense lived experience with a medical condition or family violence and researchers investigating them.

This book aims to foster collaborations between patients who have intense lived experience with a medical condition or family violence and researchers investigating them. Inviting patients or survivors into the research team is found to have significant advantages, and chapters review the literature on the benefits they can bring to investigative research teams. The collaboration can take place at multiple stages of research from helping to research design, participating in co-investigators, contributing to the interpretation of results, etc. The conditions addressed in this book include medical conditions from anxiety, postural orthostatic tachycardia syndrome, lupus, asthma, chronic kidney disease, etc. The authors are higher degree students, academics, and active research team members who share their experiences. This is be instrumental in helping patients and survivors decide whether to transition to research. It will also support research team leaders in determining how to benefit from the new perspectives researchers with lived experience bring. The personal narratives provide insight into the challenges and rewards of having lived experience while conducting research.

This book is a valuable resource for researchers in clinical fields who have been touched by firsthand exposure to a condition and have been motivated to conduct research in the respective fields. The chapters will enrich understanding for adult patients and survivors and for parents of children suffering intense experiences, who engage with the latest research publications. It will also broaden the understanding of medical, biomedical, and health sciences students interested in reading the narrative accounts of patients and survivors. Readers will gain refreshing perspectives and insights.

The book relates to patients managing all kinds of noncommunicable diseases or experiences of violence, and how they can share their valuable experiences into future advancement to research. It is related to SDG 3, good health and well-being.