Patient groups - Toby Athersuch
Frontiers in Cystinuria Research
One of the most rewarding outreach/engagement experiences I have had in recent years was running the ‘Frontiers in Cystinuria Research’ that brought together people affected by cystinuria, medical professionals, and academic researchers active in this area. The team I worked with used a Patient Experience Research Centre award from the Imperial Molecular Phenomics BRC Theme to capture some of the depth and diversity of patient experiences, which will help inform future precision medicine research. We also provided an informal patient forum to facilitate sharing of perspectives on their healthcare and lived patient experience.
Bringing patients with a common and often misunderstood disease together demonstrably helped individuals air their frustration with certain aspects of their care, and made for a fascinating discussion. By far the most memorable aspect of the day was the willingness of patients to contribute thoughtfully and carefully to the discussion and development of ideas that might not directly benefit them personally, but could have transformative impact on the care of others.