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. 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 advancementto research. It is related to SDG 3, good health and well-being.

Associate Professor Andrew Stranieri is a senior lecturer in Information Technology at Federation University Australia. His research in digital health has includes models for integrating data analytics, intelligent decision support, and human expertise, telehealth and remote patient monitoring. His work in remote sensing of vital signs has translated into practice through a spin-out company. He has been awarded many research grants and is the author of over 200 peer reviewed articles and three books.

Dr. Grant Meredith graduated from Federation University and is a lecturer of Information Technology. He leads the Technologies for Empowering People for Participation in Society (TEPPS) programme, which focuses on creating ＂assertive technologies＂. Grant was named Federation University’s Alumnus of the Year for 2015 and has been awarded numerous competitive philanthropic grants. Grant has focused on assisting people who stutter to gain speaking and social confidence through technologies. He is a person who stutters and has presented internationally on his research.

Dr. Selena (Sally) Firmin graduated from Monash University Australia. She is an Information Technology lecturer at Federation University Australia. Sally has over 25 peer-reviewed publications and has delivered several oral presentations, is a reviewer for multiple journals and conferences, and is involved with the supervision of many HDR students. Sally won a best paper award for her work on developing lifelong learners through e-communication. Sally has several grants, her most recent in collaboration with partner academics looking at fluid management in chronic kidney disease (CKD) patients. Sally is a CKD patient currently on hemodialysis.