DEBRA UK has commissioned a specialist medical research agency to conduct a detailed EB patient insight study on their behalf.
The study, which commenced in Jan 2023, involves in depth interviews with a representative sample of people from across the UK living with the different types of EB.
By conducting this study, they hope to better understand the impact of EB on the patients' physical and mental wellbeing. Also included as part of the study will be interviews with EB specialist healthcare professionals, dermatologists, and general practitioners (GPs), to capture their understanding of EB and the level of care and support currently offered.
The results of the study will help ensure that the services DEBRA UK offers to the EB community are in line with their key needs. It will also help identify the important issues for political lobbying, it will help shape the future campaigns they will run, the research they will fund, and most importantly what they do, and how they do it.
In addition to the depth interviews there will be a larger follow-on online survey.
DEBRA UK expect to receive results of the overall study by early May and plan to share them with key politicians with influence over health and social care policy at a House of Commons event on June 19th, 2023.