What questions would those people affected by sight loss most like to see answered?
A report outlining patients’ priorities for eye research will be launched at a reception at the House of Lords on 9 October, the eve of World Sight Day. Key organisations across the sight loss and vision sector have been working together to find out what those closest to the conditions most want. Forming the Sight Loss and Vision Priority Setting Partnership the group consulted patients, relatives, carers and eye health professionals to get an insight into what is most important to address through research.
Every day 100 people in the UK start to lose their sight which is a startling statistic. Even more so when social research shows that sight loss is the sense that people fear losing the most. Much is being done in the field of research to prevent sight loss and treat eye disease but many questions remain unanswered.
In May-July 2012 the partnership ran a survey asking people to identify unanswered questions about the prevention, diagnosis and treatment of sight loss and eye conditions that patients, carers and eye health professionals wished to see answered. An amazing 2,220 people responded to the survey generating 4,461 questions. After further consultation concluding in workshops attended by patients, relatives, carers and eye health professionals’ top ten lists for 12 different eye disease/condition categories have been collated. The information gathered by the Sight Loss and Vision prioritisation exercise will help ensure that future research programmes funded by charities and organisations across the UK can be targeted according to the prioritised needs of people living with sight loss, their relatives, carers and eye health professionals.
The Partnership was supported by Fight for Sight, the College of Optometrists, NIHR Biomedical Research Centre for Ophthalmology, the Royal College of Ophthalmologists, RNIB, the UK Vision Strategy and Vision 2020. It was overseen by the James Lind Alliance.
Kamlesh Chauhan, chair of the College of Optometrists said: “I am delighted that the College has been able to support this important project. For research to have the right impact, the views of those that it affects must be heard and it is refreshing that we have consulted with patients, carers and clinicians alike to help focus our efforts in the right direction”.
Michele Acton, chief executive of Fight for Sight said: “Medical research in the UK is largely reactive. With limited resources available, it is crucial that those closest to eye conditions have their say in prioritising medical research into the prevention, diagnosis and treatment of eye disease. For the first time, the Sight Loss and Vision Survey has allowed patients, relatives, carers and eye health professionals to do just that.”
Kathy Evans, chief executive of the Royal College of Ophthalmologists said:” This has given us an excellent picture of the eye research landscape in the UK. I’m proud that the Royal College of Ophthalmologists has been part of something so ground breaking for eye research. It is vital that patients and clinicians should be involved in saying what they want and yet this is the first time an exercise like this has been done in the vision sector. We will be working closely with our partners to make sure these priorities are met.”
Anita Lightstone, interim chief operations officer for VISION 2020 UK and programme director of the UK Vision Strategy said: “This project is one of the first of its kind to ensure that both the public and clinicians have a say on what they think are the most important areas for research to focus on. We hope that existing research funders from a range of sectors will take note of this and will use these research priorities to support their funding decisions”.
Tina Roberts’ daughter Rose, nine, was diagnosed with Stargardt Macular Dystrophy, an inherited condition, two years ago. Rose, who has since lost her central vision and can only see objects close up, has helped to raise vital funds for research into the condition. Tina said: “When we first received the news of Rose we were of course devastated at the thought of her losing her sight. We can’t fault the professional care that we have received – however we are still a long way off finding the cure. That’s why it’s so important for more research to be carried out to help prevent others losing their sight.”
Alistair Fielder, Professor Emeritus of Ophthalmology at City University, London and Honorary Consultant Ophthalmologist at St Mary’s and Hillingdon Hospitals, London who was involved with the project said: “To date the research undertaken has been what is thought to be important by researchers and universities so, it was great to sit down with patients and tease out what research is needed to actually help people. At last a real team effort with the patient having a say in the research for the future.”