Working closely with our colleagues in DEBRA International, we have recently initiated something new, which is in keeping with our ethos of ensuring that people living with EB are at the heart of all we do. For the first time, we have brought the ‘patient voice’ into decision-making around which areas of EB research to fund. This is not necessarily an easy thing to do, as research proposals from scientists are not written in everyday language and only other scientists can truly assess the quality and likelihood of success of a particular project. Having said that, we believe that there are ways to involve people living with EB in the process, that respects both the expertise of the many wonderful scientists who give their time to guide DEBRA in which research to fund and the valuable real life experience of people affected by the condition.

In a currently on-going competitive process to select clinical research projects for DEBRA International funding, we recruited people affected by EB and parents of people affected, to act as ‘patient reviewers’. They were asked to review the research proposals and to report on aspects of them such as whether the lay summary was understandable, whether they believed the research would be beneficial to patients and whether they thought the patients would take part in the research. This was all done in a rigorous manner that respected the confidentiality of the research proposals and protected the anonymity of the reviewers. Eleven patient reviewers from nine countries willingly participated and provided some truly excellent reviews.  Their comments will be fed back for the researchers to consider in their future plans.

There is a big learning curve involved in this undertaking but we hope to continue and improve over time.  If you live with EB and would like to be considered for a role as a patient reviewer in the future, please get in touch by emailing Avril Kennan – [email protected]

Finally, we recently co-wrote a guide to patient involvement in research, with colleagues on the steering group of the Irish Health Research Forum and this can be viewed here.