By Dr Lyndsey Butterworth (Director of Communication, WCMR)
Last month saw a clinical training event co-hosted by the Wellcome Centre for Mitochondrial Research (WCMR) at Newcastle University and MITO2i at the University of Toronto that for the first time put the focus on the patient voice, providing an opportunity for patients and caregivers to share their experiences of living with mitochondrial disease.
The innovative training session, designed to increase awareness and understanding of the condition with medical doctors, clinical trainees, allied health professionals and scientists, was very well received and reflects the highly credited patient-focussed approach to both clinical care and research that is fundamental to the WCMR team.
The online event was led by Professor Gráinne Gorman, Dr Yi Ng and Professor Bobby McFarland as part of a joint workshop hosted by international collaborators from the Mitochondrial Innovation Initiative MITO2i at the University of Toronto. Importantly, the interactive session began with videos of patients and caregivers providing their perspective of mitochondrial disease, followed by further case studies and investigation of results. The patient videos, prepared with the support of WCMR colleagues, were hugely impactful and set the tone for the training session.
The funding to prepare the videos was provided by Dr Julie Murphy, Engagement Manager for the WCMR, as part of an enrichment grant secured from Wellcome to further support engagement activities that empower our patient community.
Professor Gorman, Director of the WCMR said, “As a Centre, we always put our patients and their families at the heart of everything we do and constantly seek their invaluable insight of living with mitochondrial disease to direct our clinical care, research and engagement activities. We would like to offer a huge thank you to the patients and caregivers who helped prepare the videos used in this clinical training session, and who very openly shared their experiences of mitochondrial disease with clinicians to help increase awareness and understanding of the condition but most importantly, to share the challenges they face and their hopes for the future.”
Professor Ana Andreazza, Scientific Director of the Mitochondrial Innovation Initiative at the University of Toronto, said, “I wish to take to thank the WCMR team for the wonderful teaching session they provided during the MITO2i conference. Especially I wish to thank all the patients for providing such a unique opportunity to learn from their lived experiences.”
Professor Andreazza added, “The message from one patient really impressed me, the openness and deep understanding of the disease and what is needed was most welcome. The words used to convey the feeling that every clinician and healthcare worker should learn about mitochondrial disease and its impact on health and disease is a message that is close to my heart, and the words are deeply powerful. I hope that we as MITO2i will work closely with your team to transform this message into reality.”
The training session was an overwhelming success and the WCMR team now plan to extend the training opportunity to more clinicians and scientists from across the world as part of their commitment to increase awareness of mitochondrial disease with a diverse audience that includes medical professionals.
To find out more about the MITO2i Mitochondrial Innovation Initiative, click here.