The James Lind Alliance (JLA) The Sight Loss and Vision Priority Setting Partnership began in 2011. It was set up to ask patients, carers and eye health professionals to identify unanswered questions about the prevention, diagnosis and treatment of sight loss and eye conditions that they wished to see answered. The hope was that the outcome of the PSP would enable more targeted research. A full report will be available in autumn 2013.
A steering group was set up early in the process to oversee and drive the progress of categorising and prioritising identified uncertainties. This group consisted of a broad cross section of people from the field in the UK, including professional bodies and patient support groups.
- Katherine Cowan – James Lind Alliance, Partnership Chair
- Michele Acton – Chief Executive, Fight for Sight
- Karen Bonstein – Manager of the NIHR Biomedical Research Centre for Ophthalmology
- Michael Bowen – Director of Research, College of Optometrists
- Carol Bronze – Patient representative
- Dr Dolores Conroy – Director of Research, Fight for Sight
- Kathy Evans – Chief Executive, Royal College of Ophthalmologists
- Mark Fenton – Editor, UK Database of Uncertainties about the Effects of Treatments (UK DUETs)
- Dr Heather Giles – Patient representative
- Dr Robert Harper – Consultant Optometrist, Manchester Royal Eye Hospital
- Simon Labbett – Association of Directors of Adult Social Services, Social Care Association National Co-ordinator for the Rehabilitation Workers Consultative Network
- Anita Lightstone – Programme Director, UK Vision Strategy
- Dr Fiona Rowe – Senior Lecturer in Orthoptics, University of Liverpool. Research Lead, British and Irish Orthoptic Society
- Professor Alan Stitt – Director of the Centre for Vision and Vascular Science, Queen’s University Belfast
- Professor Heather Waterman – Professor of Nursing and Ophthalmology, University of Manchester
- Professor Marcela Votruba – Professor of Ophthalmology & Honorary Consultant Ophthalmologist, Cardiff University
- Mr Richard Wormald – Consultant Ophthalmologist, Moorfields Eye Hospital and Co-ordinating Editor, Cochrane Eyes and Vision Group
The Steering Committee set up a Data Assessment Group (DAG) to analyse to data. The DAG comprised:
- Dr Catey Bunce, Moorfields Eye Hospital
- Louise Halfhide, Moorfields Eye Hospital
- Iris Gordon, London School of Hygiene and Tropical Medicine
- Antra Zekite, Moorfields Eye Hospital
Identifying potential partner organisations
Professional organisations, charities and patient support groups were contacted and informed of the establishment and aims of the project and were invited to attend and participate in an Awareness Meeting which was held in London in April 2012.
The initial survey was launched on 1 May 2012. An amazing 2,220 people responded to the survey generating 4,461 questions. 17% identified themselves as healthcare professionals including primarily ophthalmologists, optometrists, orthoptists, ophthalmic nurses, opticians and people working in social care and rehabilitation. Over 60% were people with sight loss or an eye condition.
The survey was marketed extensively by the partner organisations. In addition, over 30 charitable and professional organisations, including One Clear Vision, promoted the survey to supporters and members. In order to make the survey as accessible as possible it was available to be completed on-line, by telephone and in paper and alternative formats including Braille and CD.
Assessing the Data
The survey questions were analysed by a Data Assessment Group to ensure that they fell within the scope of the exercise. The questions were then categorised into 12 different eye disease/conditions categories. Degenerative Vitreous Syndrome was categorised in the Vitreoretinal – Ocular Trauma section. Up to date systematic reviews were checked to establish whether research evidence answered the questions. Lists of unanswered questions for all 12 categories were then prepared for the prioritisation exercises.
Because of the large number of questions asked in 10 of the categories an interim prioritisation exercise was undertaken for each of these categories. Between March and May 2013 patients, carers and eye health professionals were asked to rank their top ten questions out of a long list of questions for each category in which they had an interest.
The responses to the interim prioritisation exercises were collated and based on the responses a short list of questions was produced for each of the 10 categories. These lists were used as the basis of the discussion at the final prioritisation workshops, held during April and May 2013 with the aim of ranking the top questions for research for each of the 12 eye disease/condition categories.
[Coming soon: our category’s short list]
Participation at the workshops was widely marketed and participants at each comprised a balanced group of patients, their family members, carers and eye health professionals. The sessions have been run by neutral facilitators to encourage full and fair participation leading to the final priorities.
The delegates were split into two groups made from equal numbers of clinicians, patients and observers and both groups went to discuss their choices. People interacted, getting up, moving questions around, making their opinions heard and making their choices. Each group ranked the questions in order and their top tens were chosen, before the groups came back together to jointly chose a final top ten.
In addition, the following three questions appeared in the top 20:
12. What causes vitreous opacities/eye floaters?
15. How can vitreous opacities/eye floaters be prevented?
17. How can the vitreous be repaired or regenerated?
We would like to thank everyone who took the time to send in their questions about DVS and choose the most important ones for them. Without your help this would not have been so successful.
For further information, please see www.sightlosspsp.org.uk