The contributions of people living with sight loss have improved the quality of many research and advocacy projects, not only within Fighting Blindness, but at a national and European level also. We are incredibly grateful to you for your participation. Some of these projects are outlined below.
Traditionally many research materials have been produced by the scientific or clinical community with no input from the end users of these materials – research participants and patients. This has meant that these materials have often been written in very technical or scientific language that can be difficult to understand and digest. However, this is no longer the case as more and more materials are developed with input from patients or patient organisations, including;
Greater patient input is also being sought when it comes to dissemination of research findings, such as in an abstract or press release.
A PPI in research session at the UCD Conway Festival of Research & Innovation in 2018 brought together 15 early career researchers with 15 patient mentors in specific disease areas. Each patient mentor was asked to help, guide and advise a researcher to write a research abstract in plain English, making it more accessible and understandable to the general public. As part of the event a VIP Network members took part with a Fighting Blindness researcher. They worked together to review the abstract and discuss how to better present this information to a lay audience. The original and revised versions of the lay abstracts from each group were presented at the festival and the Fighting Blindness partnership won Best Poster!
A number of Fighting Blindness representatives have participated in EMA Scientific Advice meetings in recent years. Scientific advice is when a medicine developer requests advice from the European Medicines Agency (EMA) for a medicine they are developing. This advice can be about manufacturing, clinical trials, non-clinical elements or methodological issues. As part of the scientific advice process, people living with a condition are invited to share their real-life perspective and experience of living with a condition or in relation to a particular medicine in their disease area. This can help medicines developers and regulators understand better what is important to people affected by this condition. Patients may be asked to contribute by participating in meetings with EMA and the medicine developer or by providing written feedback on the proposed development plan. This is a confidential process, participants must declare any conflict of interest and sign a confidentiality agreement.