In a charitable sector dominated by campaigning and service provision, Fight for Sight is one of a few sight loss charities focusing on eye research. Funding is limited however, with an estimated five out of six good quality research applications turned away. In light of this, Fight for Sight teamed up with other sight loss and vision organisations to fund a Priority Setting Partnership to discover which aspects of eye research should be prioritised. Carol Bewick from Fight for Sight tells us more about the project and how the results are already impacting on their research strategy.
Every day 100 people in the UK start to lose their sight - a startling statistic, especially when research shows that sight loss is the sense that people fear losing the most. The UK has long been at the forefront in ophthalmic research and there have been huge developments, but many questions remain unanswered.
In the sight loss and vision sector we have made a concerted effort to address preventable sight loss and improve eye health. This is achieved through an umbrella body called Vision 2020 which brings together organisations across the sector including us at Fight for Sight. But this is done within the context of what we know. There is much that we don’t know – eye diseases we can’t treat, sight loss we can’t reverse and many eye diseases we can’t prevent.
It is against this backdrop that the Eye Research Group of Vision 2020, including Fight for Sight, decided that a prioritisation exercise was needed. We had a strong feeling that people with first-hand experience of sight loss and eye diseases should be the ones to have their say.
Fight for Sight, the College of Optometrists, the NIHR Biomedical Research Centre for Ophthalmology, the Royal College of Ophthalmologists and the RNIB decided to fund a project – whether through money or staffing - using the tried and trusted methodology of the James Lind Alliance (JLA).
The JLA has worked with many AMRC members dealing with issues such as type 1 diabetes, prostate cancer and asthma to produce top ten lists of research priorities. It is an internationally recognised non-profit making initiative with a reputation for being an authoritative and independent body, guiding work and ensuring unbiased results, giving equal weighting to the views of patients, carers and health professionals. Since early 2013 it has been part of NIHR.
What did we do?
Grouping together as the Sight Loss and Vision Priority Setting Partnership we asked patients, carers and eye health professionals what questions they wanted answered about the prevention, diagnosis and treatment of sight loss and eye conditions.
Patient support groups and charities from outside the sector supported the push to encourage as many people affected by sight loss as possible to respond to the survey. People could respond online, by hard-copy, by phone, and audio and Braille versions were available as well.
2,220 people responded generating 4,461 questions about over 100 different eye diseases and conditions – making it the biggest consultation of its kind. Responders ranged in age from 105 years to a parent on behalf of a 16 month old baby.
After a lengthy process of analysis, removal of duplicate and out of scope questions, an interim prioritisation exercise and final workshops, research priorities were agreed.
What was the result?
With questions relating to over 100 different eye conditions, we decided to group the conditions into twelve categories, with each category having a list of 10 (or 11) priorities.
In October 2013 we launched the final report of the exercise at the House of Lords to coincide with World Sight Day. The event brought together public, charitable and private sector funders, parliamentarians and some of the patients and eye health professionals who had participated.
Nick Astbury, Consultant Ophthalmic Surgeon and Chair of Vision 2020 UK said:
The whole process has been well led, innovative and professionally conducted and hopefully will step up sight loss and vision research to a new level.
Tina Roberts who took part in the exercise on behalf of her daughter Rose, aged nine, who has Stargardt’s disease said:
When I was invited to the workshop I was very unsure of the significance of it. I knew it was important, but I certainly didn't realise just how until I participated that day. I have to say listening to the speeches [at the launch], the importance of it grew again, and the potential impact it could have on so many lives. I hope one day we are standing all together celebrating when one or several priorities have been achieved.
Baroness D’Souza, Lord Speaker, commented about the rarity of a sector being able to pull together and work collaboratively.
What happens next?
Deciding on the priorities and publishing the report are by no means the end of the process. The priorities have given a picture of the landscape of eye research which enables existing funders to focus their priorities and gives us the opportunity to approach potential new funders from a position of knowledge and armed with the powerful ammunition of what patients, carers and eye health professionals really want.
We are already encouraging researchers to investigate what is most important and to reference the exercise in their grant applications.
In time, through monitoring funded research, we will be able to see which priorities have been met and which are not attracting funding.
Was it worth it?
Yes. Whilst the key test will be whether or not the priorities are met, we are already starting to reap the benefits of the exercise.
People with a wide range of eye conditions who participated now feel empowered and much more connected to the research agenda. This is true for people with common eye conditions but we also found that many people with rare eye diseases welcomed the chance to have a voice.
Research has long been the poor relation in the sight loss and vision charitable sector. We hope that this is now changing after such an intense collaboration and with a very clear demand for increased investment in eye research. We were delighted that NPC highlighted the exercise and the need for research in their report In sight which was funded by The Clothworkers’ Foundation. Let’s hope that this will translate into more funds too.
The amount of time and effort taken to conduct an efficient and effective priority setting consultation cannot be under estimated however. The exercise took 12 months to complete and then the report was written and published. In the last two months we ran 12 one-day workshops with 155 participants.
But we have no doubt that it was worth it. The benefits greatly outweigh the work we had to do. We now have an information base we could never otherwise have had – information which we can use in the long term to make changes.
Having data gathered through patient involvement not only inspires confidence in the results but gives the whole sector valuable information to use when lobbying for more funds. The priorities have opened doors to current and potential funders which we would otherwise have battled to open. The sector is able to co-ordinate efforts to ensure that grant applications reflect the priorities in a sustained effort to take them forward. This is the first time anywhere in the world that an exercise of this sort has been done to this scale.
We are looking forward to measuring in a year, in five years and ten years how far the research has progressed.