How we did it
1. Initial process
The Sight Loss and Vision Priority Setting Partnership (PSP) survey was launched on 1 May 2012 and was open for responses until 31 July 2012. The aim of the survey was to identify the 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. 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, Fight for Sight, the College of Optometrists, NIHR Biomedical Research Centre for Ophthalmology, The Royal College of Ophthalmologists and Vision 2020. In addition, over 30 charitable and professional organisations promoted the survey to their supporters and members. This was done through websites, at patient days, exhibitions, in newsletters and through the use of social media. Participation was also actively encouraged through letters to regional press and broadcasts on Insight Radio – the station for blind and partially sighted listeners.
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.
2. 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. 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.
3. Interim prioritisation
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 number of questions asked in the categories relating to cataract and ocular cancer was such that an interim prioritisation exercise was not required.
- Age-related Macular Degeneration (AMD) (DOC)
- Childhood-onset Eye Disorders (DOC)
- Corneal And External Eye Diseases (DOC)
- Glaucoma And Related Syndromes (DOC)
- Inherited Retinal Diseases (DOC)
- Neuro-ophthalmology (DOC)
- Ocular Inflammatory Diseases (DOC)
- Refractive Error And Ocular Motility (DOC)
- Retinal Vascular Disorders (DOC)
- Vitreoretinal / Ocular Trauma (DOC)
4. Final prioritisation
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. Together with the short list of questions relating to cataract and ocular cancer these lists were used as the basis of the discussion at the final prioritisation workshops. These are being 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.
Participation at the workshops has been 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 results for each condition category are available on the home page. A full report will be available in autumn 2013.