The Sight Loss and Vision PrioritySetting Partnership (SLV-PSP): overviewand results of the research prioritisationsurvey process

Fiona Rowe,1,2 Richard Wormald,3,4 Richard Cable,5 Michele Acton,5

Karen Bonstein,6 Michael Bowen,7 Carol Bronze,8 Catey Bunce,3,4,6

Dolores Conroy,5 Katherine Cowan,9 Kathy Evans,10 Mark Fenton,11

Heather Giles,8 Iris Gordon,4 Louise Halfhide,6 Robert Harper,12 Anita Lightstone,13

Marcela Votruba,14 Heather Waterman,15 Antra Zekite3

To cite: Rowe F, Wormald R,Cable R, et al. The Sight Lossand Vision Priority SettingPartnership (SLV-PSP):overview and results of theresearch prioritisation surveyprocess. BMJ Open 2014;4:e004905. doi:10.1136/bmjopen-2014-004905

▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2014-004905).

Received 21 January 2014Revised 30 June 2014Accepted 1 July 2014

For numbered affiliations seeend of article.

Correspondence toDr Fiona Rowe;rowef@liverpool.ac.uk

ABSTRACTObjectives: The Sight Loss and Vision Priority SettingPartnership aimed to identify research priorities relatingto sight loss and vision through consultation withpatients, carers and clinicians. These priorities can beused to inform funding bodies’ decisions and enhancethe case for additional research funding.Design: Prospective survey with support from theJames Lind Alliance.Setting: UK-wide National Health Service (NHS) andnon-NHS.Participants: Patients, carers and eye healthprofessionals. Academic researchers were excludedsolely from the prioritisation process. The survey wasdisseminated by patient groups, professional bodies, atconferences and through the media, and was availablefor completion online, by phone, by post and byalternative formats (Braille and audio).Outcome measure: People were asked to submit thequestions about prevention, diagnosis and treatment ofsight loss and eye conditions that they most wanted tosee answered by research. Returned survey questionswere reviewed by a data assessment group. Prioritieswere established across eye disease categories at finalworkshops.Results: 2220 people responded generating 4461submissions. Sixty-five per cent of respondents hadsight loss and/or an eye condition. Following initialdata analysis, 686 submissions remained whichwere circulated for interim prioritisation (excludingcataract and ocular cancer questions) to 446 patients/carers and 218 professionals. The remaining 346questions were discussed at final prioritisationworkshops to reach agreement of top questions percategory.Conclusions: The exercise engaged a diversecommunity of stakeholders generating a wide rangeof conditions and research questions. Top priorityquestions were established across 12 eye diseasecategories.

INTRODUCTIONIn the UK, it is estimated that almost twomillion people are affected by sight loss andthis number is expected to double by 2050.1

Currently 50% of sight loss in the UK isavoidable, but there are also many unavoid-able sight loss conditions. Whether it is toaddress childhood eye conditions or thoseaffecting adults, research is needed toinform us about prevention, to develop newtechniques for early diagnosis, and todevelop new and more effective treatmentsfor many eye conditions.The Sight Loss and Vision Priority Setting

Partnership (SLV-PSP) was developed fromearlier work by the Eye Research Group(ERG) of VISION 2020 UK whose mission isthe elimination of avoidable sight loss andthe amelioration of the effects of sight losswhen it cannot be avoided.2 The UK VisionStrategy sets out ways of addressing avoidablesight loss in the UK. There is much that canbe done to improve the nation’s eye health,and to eliminate avoidable sight loss. Thereare however gaps in the evidence baseregarding eye health interventions and thebest way to deliver services. Research isneeded to support the UK Vision Strategy. In

Strengths and limitations of this study

▪ Wide ranging and comprehensive coverage.▪ Substantial response.▪ The hardest to reach and those with the least

opportunity to be heard may indeed have notbeen heard.

▪ Any such groups now feeling excluded shouldhave an opportunity to redress this.

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key areas, research is urgently required to enable theVision Strategy to be implemented in an evidence-basedway that ensures efficient and effective development.Despite on-going research in the UK and other coun-

tries, there are still many questions about the prevention,diagnosis and treatment of sight loss and eye conditionsthat remain unanswered. Given that resources for researchare limited, it is important for research funders to under-stand how patients, carers and eye health professionals pri-oritise these unanswered questions so that future researchcan be consolidated and targeted accordingly.3

The purpose of this project was to undertake a com-prehensive, UK-wide, survey of patients, carers and clini-cians to identify research questions and priorities toinform decisions of funding bodies and enhance thecase for additional research funding.The priority setting process has been well established

by the James Lind Alliance ( JLA) (http://www.lindalliance.org/) which has supported partnerships ona range of topics since 2004. This partnership initiatedby Fight for Sight, the UK’s leading eye research charitywas established with support, financial and in kind, fromthe College of Optometrists, the Royal College ofOphthalmologists, the NIHR Moorfields BiomedicalResearch Centre, the RNIB, UK Vision Strategy and theCochrane Eyes and Vision Group. A representative fromthe JLA convened meetings of the steering committeeand provided independent chairmanship for this andthe priority setting workshops. Their extensive experi-ence in this process ensured no single voice exertedundue influence over the prioritisation process and thatthe views of patients, their carers and clinicians wereparamount. The views of researchers with no clinicalinvolvement with patients and views of commercial orga-nisations were not included in the prioritisation.

METHODS AND MATERIALSThe detailed methods for this prioritisation process havebeen described in detail elsewhere.4 In brief, the processcomprised five stages (figure 1). Our study did notrequire ethical approval or consent from participants.JLA priority setting partnerships do not require ethicalapproval. Dissemination of the survey was via open com-munications through professional bodies, charities andrelated organisations. The survey was not undertakenthrough Higher Education Institutes or throughNational Health Service (NHS) organisations and doesnot recruit NHS patients. The survey contained clearinformation on the aims of the priority setting partner-ship, how the process works and how data will be used.In addition, submission of questions was anonymised.For the workshops in which priorities were discussedand agreed, participants choose to voluntarily attendand consent was not required for this. We followed theethical guidance for participation, information andevaluation from the JLA guidebook (http://www.jlaguidebook.org/jla-guidebook.asp?val=56).

Establishing the SLV-PSPA steering committee and data assessment group com-prising the authors of this article oversaw the process.Each member was responsible for contributing to andmanaging a part of the process and was selected fortheir expertise and association with eye research. Thesteering committee also included patient representativesand eye health professionals. In April 2012, an initialstakeholder meeting was held to engage the groups andorganisations with member bases and community influ-ence. This was to ensure that the initial survey would bedisseminated and completed by as many patients, rela-tives, carers and eye health professionals as possible inthe UK.

Main surveyThe SLV-PSP survey was launched on 1 May 2012 andwas open until 31 July 2012. The aim of the survey wasto identify patients’, carers’ and eye health professionals’unanswered questions about sight loss and eye condi-tions. The survey’s primary question was “What question(s) about the prevention, diagnosis and treatment ofsight loss and eye conditions would you like to seeanswered by research?”

Data analysisFollowing closure of the survey, all submissions wereexamined. Out-of-scope submissions were removedincluding those not related to the topic and uncertain-ties better suited to social research. In-scope uncertain-ties were allocated into disease-specific groups andreworded in PICO format (Population, Intervention,Comparison, Outcome). Searches were then undertakento ascertain whether each uncertainty could be answeredby an up-to-date systematic review. All unanswered uncer-tainties were then allocated to 1 of 12 eye disease cat-egories, with duplicates removed and similar questionscombined. Checks were also made to identify anyon-going trials, which might address the uncertainty.The 12 categories were formed following discussions bythe steering group on the most logical and pragmaticway to organise the data within the time and resourcesavailable.

Interim prioritisationIn order to start reducing the number of uncertainties,an interim prioritisation exercise was conducted overemail and by post. Patients, carers and eye health profes-sionals were invited to examine the long lists and thenchoose and rank 10 of the uncertainties.

Final prioritisationThe remaining uncertainties were ranked by patients,carers, relatives, organisation representatives and eyehealth professionals in 1-day workshops facilitated by theJLA, using Nominal Group Technique—a mix of discus-sion and ranking. For each category, the top 10/11 ques-tions were agreed.

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RESULTSMain surveyIn response to the survey, 2220 people generated 4461submissions. Of these respondents, 17% identified them-selves as healthcare professionals including primarilyophthalmologists, optometrists, orthoptists, ophthalmicnurses, opticians and people working in social care andrehabilitation services (figure 2). Over 60% were peoplewith sight loss or an eye condition. The average age ofsurvey participants was 65.7 years old (range 16 months(proxy completion of survey by adult carer) to105 years). Just under two-thirds (62%) of the respon-dents were female. The geographical split was England89%, Scotland 6%, Wales 4% and Northern Ireland 1%.

Data analysisFollowing data analysis to remove duplicate/answered/out of scope uncertainties, 686 uncertainties remained.These were divided into 12 eye disease categories.Table 1 shows each category with the initial number ofsubmissions received after the survey responses were sub-mitted, the number of uncertainties sent to interim pri-oritisation, the number of participants at interimprioritisation and the number of uncertainties consid-ered at the final prioritisation workshops.

Interim prioritisationRespondents from the initial survey, organisations andeye healthcare professionals with expertise in the eye

Figure 1 Flow chart showing

the steps of the process from

stage 1 when establishing the

Priority Setting Partnership (PSP)

through to stage 5 at the final

prioritisation (PICO, Population,

Intervention, Comparison,

Outcome).

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diseases in 10 categories were contacted to provideinterim priority rankings. The smaller number of ques-tions asked in the categories relating to cataract andocular cancer meant that an interim prioritisation exer-cise was not required for either category. A large

response was received for the interim exercise, withinput from 446 patients, carers and relatives plus 218 eyehealth professionals. Uncertainties accumulated scoresbased on rank and frequency, resulting in short lists ofaround 30 uncertainties per category, which were takento final workshops.

Final prioritisationIn April and May 2013, 12 final prioritisation workshopswere held: one for each eye disease category. Balancednumbers of patients/carers/relatives and eye health pro-fessionals participated. In total, 155 participantsattended across all 12 workshops: 78 patients and 77clinicians (table 2). The topics debated at each work-shop comprised between 19 and 31 questions per cat-egory. Overall, 153 questions about sight loss and visionwere considered resulting in lists of 10/11 priorities foreach of the 12 categories (table 3). The questionsaddressed the broad topics of aetiology, prevention,identification and interventions with the number 1 ques-tions as follows:Age-related macular degeneration1. Can a treatment to stop dry AMD progressing and/or

developing into the wet form be devised?Cataract1. How can cataracts be prevented from developing?Childhood-onset disorders1. How can cerebral visual impairment be identified,

prevented and treated in children?

Figure 2 Background of respondents showing that questions

were largely received from people who have sight loss or an

eye condition, but also including eye health professions,

organisations, parents, family and carers.

Table 1 Categories of eye condition

Initial number of

survey questions

Number of questions

at interim

prioritisation

Number of participants

at interim prioritisation

Number of questions

at final prioritisation

Age-related macular

degeneration

763 43 101 PPI

25 Professionals

29

Cataract 191 27 Not required 27

Childhood-onset

disorders

125 69 12 PPI

20 Professionals

30

Corneal and external

diseases

292 93 25 PPI

38 Professionals

30

Glaucoma 1235 78 182 PPI

25 Professionals

30

Inherited retinal diseases 280 63 27 PPI

25 Professionals

30

Neuro-ophthalmology 125 43 15 PPI

21 Professionals

30

Ocular cancer 26 19 Not required 19

Ocular inflammatory

diseases

472 66 27 PPI

21 Professionals

30

Refractive error and

ocular motility

188 70 21 PPI

23 Professionals

31

Retinal vascular

diseases

205 56 15 PPI

12 Professionals

30

Vitreoretinal and ocular

trauma

265 59 21 PPI

8 Professionals

30

Professionals: Inclusive of eye health professions.Patient and Public Involvement (PPI): Inclusive of patients, carers, relatives, organisation representatives.

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Corneal and external diseases1. Can new therapies such as gene or stem cell treat-

ments be developed for corneal diseases?Glaucoma1. What are the most effective treatments for glaucoma

and how can treatment be improved?Inherited retinal diseases1. Can a treatment to slow down progression or reverse

sight loss in inherited retinal diseases be developed?Neuro-ophthalmology1. What is the underlying cause of optic nerve damage

in optic neuropathies, such as anterior ischaemicoptic neuropathy, Leber’s hereditary optic neur-opathy, optic neuritis and other optic neuropathies?

Ocular cancer1. What can be done to help ocular cancer sufferers?Ocular inflammatory diseases1. What are the most effective treatments for ocular and

orbital inflammatory diseases?Refractive error and ocular motility1. What factors influence the development of refractive

error (myopia, astigmatism, presbyopia andlong-sightedness)?

Retinal vascular diseases1. What are the best methods to prevent retinopathy of

prematurity?Vitreoretinal and ocular trauma1. How can surgical techniques be improved to save

sight for eyes damaged by injury?

DISCUSSIONAbout 50% of sight loss in the UK is currently avoid-able.1 Recognising this and the UK’s pre-eminent pos-ition in eye research, the Vision 2020UK ERGconsidered that any UK Research Agenda must look ataddressing unavoidable sight loss for it to be credible.The challenge was to produce a coherently constructedand constituted prioritised research agenda whose

methods were clear and for which there had been inclu-sive and widespread consultation, where everyone withan interest had been offered the opportunity to contrib-ute and be heard. As a result of this priority setting part-nership, we have established top 10 lists of researchquestions for a range of eye conditions.There are a number of strengths to this study. The

SLV-PSP is unique because it sought the combined viewsof patients, carers and eye health professionals to identifyuncertainties about the prevention, diagnosis and treat-ment of sight loss and eye conditions and prioritise themfor research to address.5 It is rare that those with directexperience of conditions are able to influence theresearch agenda.3 5 6 The views of patients, carers and pro-fessionals were given equal merit. All submitted questionswere evaluated independently and equally. Duplicate ques-tions and out-of-scope questions were removed. We didnot encounter particular misunderstandings between lay-persons and professionals or insufficient knowledge of thepublic. Open discussions occurred during the face-to-faceworkshops with good communication and facilitation toencourage respectful listening in accordance with JLAguidelines. Questions could only be pooled if this wasagreed by patients, carers and professionals. Where therewas no agreement, the questions remained separate. Thus,any differing perspectives of priorities between partici-pants were acknowledged. We did not aim to compare andcontrast questions from patients, carers and professionalsbut to represent and act on all.This SLV-PSP provided an extensive set of unanswered

questions prioritised by patients, carers and eye healthprofessionals across 12 categories of eye conditions.These questions addressed a broad range of eye condi-tions and considered issues of aetiology, prevention,screening, assessment and management. Importantly,the public were as likely to propose questions in relationto aetiology, assessment and management just as profes-sionals were as likely to raise questions regarding impactof sight loss.

Table 2 Final workshop participants

Category

Total number

of workshop

participants

Number of patients,

relatives, carers, patient

groups and organisations

Number of

eye health

professionals

Age-related macular degeneration 17 9 8

Cataract 11 5 6

Childhood-onset disorders 16 7 9

Corneal and external diseases 12 5 7

Glaucoma 17 9 8

Inherited retinal diseases 19 11 8

Neuro-ophthalmology 10 6 4

Ocular cancer 10 6 4

Ocular inflammatory diseases 10 5 5

Refractive error and ocular motility 12 5 7

Retinal vascular diseases 11 3 8

Vitreoretinal and ocular trauma 10 7 3

Total 155 78 77

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Table 3 Top 10 lists per category

Age-related macular

degeneration Cataract

Childhood-onset

disorders Corneal and external diseases Glaucoma

Inherited retinal

diseases

1 Can a treatment to

stop dry AMDprogressing and/ordeveloping into thewet form be devised?

How can cataracts be

prevented fromdeveloping?

How can cerebral visual

impairment be identified,prevented and treated inchildren?

Can new therapies such as gene

or stem cell treatments bedeveloped for corneal diseases?

What are the most

effective treatmentsfor glaucoma and howcan treatment beimproved?

Can a treatment to slow

down progression orreverse sight loss ininherited retinaldiseases be

developed?2 What is the cause of

AMD?Can the return of cloudyor blurred vision aftercataract surgery knownas posterior capsule

opacity (PCO) orsecondary cataract beprevented?

How can treatment forvisual pathway damageassociated with pretermbirth be developed?

What is the most effectivemanagement for dry eye and cannew strategies be developed?

How can loss of visionbe restored for peoplewith glaucoma?

How can sight loss beprevented in anindividual with inheritedretinal disease?

3 How can AMD beprevented?

How can cataractprogression be slowed

down?

How do we improvescreening and

surveillance from theantenatal period throughto childhood to ensureearly diagnosis ofimpaired vision and eye

conditions?

Can treatments to save eye sightfrom microbial keratitis be

improved?

How can glaucoma bestopped from

progressing?

Is a genetic (molecular)diagnosis possible for

all inherited retinaldiseases?

4 Are there ways ofrestoring sight loss forpeople with AMD?

What alternatives to treatcataracts other thancataract surgery arebeing developed?

Can the treatment ofamblyopia be improved toproduce better short-termand long-term outcomes

than are possible withcurrent treatments?

How can the rejection of cornealtransplants be prevented?

What can be done toimprove earlydiagnosis ofsight-threatening

glaucoma?

What factors affect theprogression of sightloss in inherited retinaldiseases?

5 Can the developmentof AMD be predicted?

What is the cause ofcataract?

How can cataract beprevented in children?

Can the outcomes of cornealtransplantation be improved?

What causesglaucoma?

What causes sight lossin inherited retinal

diseases?6 What is the most

effective way to detectand monitor theprogression of early

AMD?

How can cataractsurgery outcomes beimproved?

What are the causes ofcoloboma andmicrophthalmia/anophthalmia and how

can they be prevented?

What causes keratoconus toprogress and can progression beprevented?

What is the mosteffective way ofmonitoring theprogression of

glaucoma?

What is the mosteffective way to supportpatients with inheritedretinal disease?

7 What factors influencethe progression ofAMD?

How safe and effectiveis laser assisted cataractsurgery?

Can vision be corrected inlater life for people withamblyopia?

Can non-surgical therapy bedeveloped for Fuchs’ cornealdystrophy?

How can glaucomapatients with a higherrisk to progressrapidly be detected?

Can the diagnosis ofinherited retinaldiseases be refined sothat individuals can be

given a clearer ideaabout their specificcondition and how it islikely to progress?

Continued

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Table 3 Continued

Age-related macular

degeneration Cataract

Childhood-onset

disorders Corneal and external diseases Glaucoma

Inherited retinal

diseases

8 Can a non-invasivetherapy be developed

for wet AMD?

Should accommodativelenses be developed for

cataract surgery?

How can retinoblastomabe identified, prevented

and treated in children?

Can corneal infections beprevented in high-risk individuals

such as contact lens wearers?

Why is glaucomamore aggressive in

people of certainethnic groups, suchas those of WestAfrican origin?

What is the relationshipbetween sight loss and

mental health for peoplewith inherited retinaldiseases?

9 Can dietary factors,

nutritionalsupplements,complementarytherapies or lifestylechanges prevent or

slow the progressionof AMD?

What is the best

measure of visualdisability due tocataract?

Can better treatments for

glaucoma in children bedeveloped?

What is the cause of keratoconus

and can it be prevented?

How can glaucoma be

prevented?

Would having a

treatment for aninherited retinal diseasepreclude a patient fromhaving anothertreatment?

10 What are the bestenablement strategies

for people with AMD?

Can retinal detachmentbe prevented after

cataract surgery?

Can a treatment bedeveloped to improve

vision for people withalbinism?

What is the most effectivemanagement of ocular

complications associated withStevens Johnson Syndrome?

Is there a linkbetween treatment

adherence andglaucoma progressionand how canadherence beimproved?

With regard to inheritedretinal diseases what is

the role of prenatal andpreimplantationdiagnosis in helpingparents make informedchoices?

11 What are the outcomesfor cataract surgeryamong people withdifferent levels ofcognitive impairment (all

causes excludingdementia, stroke,neurological conditions,head injuries)?

Can severe ocular surfacedisease in children, such asblepharokeratoconjunctivitis andvernal keratoconjunctivitis bemanaged better?

Neuro-ophthalmology Ocular cancer

Ocular

inflammatory

diseases

Refractive error and ocular

motility

Retinal vascular

diseases

Vitreoretinal and

ocular trauma

1 What is the underlying cause ofoptic nerve damage in optic

neuropathies, such as anteriorischaemic optic neuropathy,Leber’s hereditary opticneuropathy, optic neuritis andother optic neuropathies?

What can be done tohelp ocular cancer

sufferers?

What are the mosteffective treatments

for ocular and orbitalinflammatorydiseases?

What factors influence thedevelopment of refractive error

(myopia, astigmatism,presbyopia andlong-sightedness)?

What are the bestmethods to prevent

retinopathy ofprematurity?

How can surgicaltechniques be

improved to savesight for eyesdamaged by injury?

Continued

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Table 3 Continued

Neuro-ophthalmology Ocular cancer

Ocular

inflammatory

diseases

Refractive error and ocular

motility

Retinal vascular

diseases

Vitreoretinal and

ocular trauma

2 What are the most effective

treatments and rehabilitation foroptic neuropathies, eg, Leber’shereditary optic neuropathy andanterior ischaemic opticneuropathy?

Can gene-based

targeted therapies forocular cancers bedeveloped?

What causes thyroid

eye disease?

What is the cause of both

congenital and acquirednystagmus?

How can sight loss

from diabetic retinalchanges be preventedand reduced?

How can the risk of

losing sight forpeople with retinaldetachment bereduced?

3 Can vision loss due to optic nervediseases such as giant cellarteritis, Leber’s hereditary opticneuropathy, optic neuritis and opticatrophy, be restored, eg, through

gene therapy and stem celltreatment?

How canimmunotherapy beused to fight metastaticocular melanoma?

Can the severity ofocular and orbitalinflammatorydisease in anindividual be

predicted?

How can the development ofbinocular vision in youngchildren with squint andamblyopia be promoted, andwould the same approach

work in older individualswithout inducing intractablediplopia?

What are the predictivefactors for theprogression to sightthreatening diabetic eyedisease?

How can betterinterventions bedeveloped that areeffective in treatingvitreous opacities/

eye floaters?

4 What rehabilitation or treatment

methods are most effective forvision loss following brain damagedue to stroke, brain injury, cerebralvision impairment, tumours anddementias?

What are the most

effective detection andscreening methods forfollow-up to detectmetastasis of ocularmelanoma?

Is it possible to

prevent furtheroccurrences ofretinal damagecaused bytoxoplasmosis?

Would correction of refractive

error have a positive impacton early life learning anddevelopment?

Is there a way to

improve screening ofpremature babies forretinopathy ofprematurity?

What causes retinal

detachment and canit be prevented?

5 What is the most effective way toassess vision in patients withneurological visual impairment ie,stroke, dementia and cerebral/cortical visual impairment?

How can follow-up forocular complications bemanaged in patientswith ocular melanoma?

What causesbirdshot retinopathy?

Does early diagnosis ofrefractive error improvelong-term prognosis andpromote faster, more effectivetreatment?

Can an effective longlasting treatment fordiabetic macularoedema, bothischaemic and

non-ischaemic, bedeveloped?

Can more effectivediagnostic tools bedeveloped forassessing thevitreous and eye

floaters?

6 Can the early stages of opticneuropathy be detected?

What is the bestmanagement ofmetastatic choroidal

melanoma?

Why does diseaseburn out in patientswith ocular and

orbital inflammatorydiseases?

What is the effect ofcongenital nystagmus onvisual and emotional

development?

Can a retinal veinocclusion be predictedand prevented?

Can a functioningprosthetic eye bedeveloped to

replace an eyedamaged by injury?

7 How can optic neuropathies beprevented, for example anterior

ischaemic optic neuropathy,Leber’s hereditary opticneuropathy, optic neuritis andother optic neuropathies?

What activateschoroidal melanoma

metastasis in the liverafter the primarymelanoma has beentreated?

Can early detectionmethods be

developed for ocularand orbitalinflammatorydiseases?

What is the most effectivetreatment for exotropia and

when should it be delivered?

Can new non-invasivetreatments be

developed to slowdown the progressionof diabetic retinopathy?

How can epiretinalmembrane/fibrosis

be prevented ortreated?

8 Can treatments be developed for

visual field and ocular motilitymanifestations following stroke?

Can adjuvant therapies

be developed to treatocular melanoma?

What medications

best prevent thedevelopment of eyedisease in Behcets?

How can the functional effects

of surgical treatment for squintbest be assessed?

What are the barriers

that prevent diabeticpatients having regulareye checks?

Can stem cells be

used to regrow aneye or part of aneye?

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In addition to the strengths of our study, we identifieda number of limitations. We were unable to calculate aresponse rate for the survey because of the nature of itsdesign and implementation. We did not request theviews of ‘pure’ researchers (ie, scientists with no currentclinical practice) as these individuals are intentionallyexcluded from the priority setting process by the JLA.This step is a key feature of the JLA methodology inwhich the remit is to provide an opportunity forpatients, carers and clinicians to influence the researchagenda. We acknowledge this is a different approach butdo not consider their exclusion as a flaw in this processas we include clinical researchers who did take partalongside clinicians and the public.These questions may now be used to encourage

researchers to investigate what is most important tothese groups. We do not know how our research ques-tions compare with the prioritisation of research areasby scientists, government agencies or other organisationresearch funders. We are unaware of any systematic datacollating such data.Various organisations in the sector have set out prior-

ities for eye health and eye research in the past, forexample Vision2020UK.7 In addition, organisationsrepresenting the interests of patients/carers and eyehealth professionals took part in the process, both inpromoting the survey and being directly involved in pri-ority setting. Future work to review the SLV-PSP projectspriorities with these organisations could be helpful indeveloping an understanding of how these new, patientand clinician led priorities can inform the sectorsapproach to commissioning research and focusingresources. Organisations in the sector are alreadyworking to review their organisational priorities with theSLV priorities, and have begun to invite researchersseeking funding to consider how their proposedresearch relates to the SLV priorities.Similar to other PSP processes, we have provided infor-

mation on our research priorities openly to nationalfunding organisations and it is envisaged that researchfunders will be able to use the list to inform commis-sioned calls for research and identify which researchapplications to response mode funding opportunitiescan answer questions that these groups have agreed area priority. Furthermore, any questions or uncertaintiesnot prioritised in this process were submitted to and arecurrently available in the UK Database of Uncertaintiesabout the Effects of Treatments (UK DUETs). Thus,individuals looking for uncertainties for their researchcan access such information directly from the UKDUETs. This sharing of information contributes to thequality assurance process of avoiding waste in research.The SLV-PSP will also help to increase awareness of

why research on sight loss and vision is necessary andimportant. It will be used to campaign for the majorfunders to invest in sight loss and eye conditions, all ofwhich are placing increased emphasis on researchersdemonstrating how they have consulted and involved

Table

3Co

ntinued

Neuro-ophthalm

ology

Ocularcancer

Ocular

inflammatory

diseases

Refractiveerrorandocular

motility

Retinalvascular

diseases

Vitreoretinaland

oculartrauma

9How

canelectronic

devices

improveorrestore

visionfor

people

withopticneuropathies?

Whatare

thecausesof

ocularcancerandhow

cantheybeprevented?

Whatcauses

scleritis?

Could

theaccurate

testingof

refractiveerrorbemadeless

dependentonasubjective

responseie,theperson’s

own

response?

Whatrehabilitation

programmesare

best

forthemanagementof

distortedvisionfrom

retinaldiseases?

Whatcauses

posteriorvitreous

detachment/vitreous

syneresis?

10

Cananalternativeornew

treatm

entbedevelopedthatwill

treatthesightlosscausedbygiant

cellarteritis?

Whatisthemost

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entfor

primary

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Candietorlifestyle

changesprevent

uveitis

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developing?

How

canmyopia

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Whatistheefficacy

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of

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thetreatm

entof

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prematurity?

Are

there

methods

topreventand

improvethe

treatm

entof

macularholes?

AMD,age-relatedmaculardegeneration;VEGF,vascularendothelialgrowth

factor.

Rowe F, et al. BMJ Open 2014;4:e004905. doi:10.1136/bmjopen-2014-004905 9

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the public and patients in the process of developingtheir research.These remain as significant goals. For a sector with

around 700 organisations to arrive at any kind of consen-sus for research priority areas, a process that was genu-inely consultative, open and engaging to the individualswhose interests these organisations represent as well as atan organisational level was recognised as being critical.For a prioritisation exercise to be useful to the sector itneeds to make sense to funders and statutory bodies, withresponsibilities and interests in these areas, and toresearchers. It was recognised that a prioritisation ofresearch areas produced by a small group within thesector would not be credible and would never engage thesupport required for it to achieve the goals listed above.

CONCLUSIONSFollowing a systematic process of national consultationand widespread survey of patients, carers and clinicians,2220 individuals generated 4461 questions. Through aprocess of data analysis, interim prioritisation and finalworkshops, a top 10 or 11 research questions have beenidentified for 12 categories of eye conditions. This is thefirst time, to our knowledge, that an exercise like thishas been carried out anywhere in the world for sightloss and vision. Not only is this the most wide rangingand ambitious JLA priority setting partnership, it alsoengaged a diversity of participants and enabled them toreach consensus together. For the first time, we have aclear idea of what the consumers of eye research—thepatients and the people who care for and treat them—

believe research money should be spent on. It has pro-vided a focus for research in sight loss and vision and itis intended that these priorities are used to informfunders, researchers, clinicians and the public.

Author affiliations1British and Irish Orthoptic Society, London, UK2Department of Health Services Research, University of Liverpool, Liverpool,UK3Research and Development Department, Moorfields Eye Hospital NHSFoundation Trust, London, UK4The Cochrane Eyes and Vision Group, London School of Hygiene andTropical Medicine, London, UK5Fight for Sight, London, UK6NIHR Biomedical Research Centre at Moorfields and UCL Institute ofOphthalmology, London, UK7College of Optometrists, London, UK8London, UK

9The James Lind Alliance ( JLA)—National Institute for Health Research,Southampton, UK10Royal College of Ophthalmologists, London, UK11UK DUETs (NICE Evidence—UK Database of Uncertainties about the Effectsof Treatments), London, UK12Manchester Academic Health Sciences Centre, Manchester Royal EyeHospital, Manchester, UK13UK Vision Strategy/VISION 2020 UK, London, UK14School of Optometry and Vision Sciences, Cardiff University, Cardiff, UK15School of Nursing, Midwifery and Social Work, University of Manchester,Manchester, UK

Contributors All the authors contributed to the conduct of the survey. FR,RW, RC, MA, MB, DC and KC were involved in the drafting of the paper. KB,CBr, CBu, KE, MF, HG, IG, LH, RH, AL, MV, HW and AZ contributed toproofing of the paper.

Funding This work was supported through funding and/or in-kind support byCollege of Optometrists, Fight for Sight, James Lind Alliance, NIHRMoorfields BRC, RNIB, Royal College of Ophthalmologists and UK VisionStrategy.

Competing interests RW is funded by financial support from the UK’sDepartment of Health through the award made by the National Institute for HealthResearch to Moorfields Eye Hospital NHS Foundation Trust and UCL Institute ofOphthalmology for a Specialist Biomedical Research Centre for Ophthalmology.The views expressed in this presentation are those of the authors and notnecessarily those of the Department of Health. The Cochrane Eyes and VisionGroup is also funded by the National Institute for Health Research through agrant held at the London School of Hygiene and Tropical Medicine.

Provenance and peer review Not commissioned; externally peer reviewed.

Data sharing statement All original data are held by Fight for Sight. Extradata is available from: http://www.library.nhs.uk/duets/SearchResults.aspx?catID=14501. The additional unpublished data includes research questionsnot included in the final top 10 lists of research priorities.

Open Access This is an Open Access article distributed in accordance withthe Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license,which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, providedthe original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

REFERENCES1. Access Economics. Future Sight Loss UK 1: The economic impact

of partial sight and blindness in the UK adult population, RNIB,2009.

2. http://www.vision2020uk.org.uk/3. Chalmers I, Glasziou P. Avoidable waste in the production and

reporting of research evidence. Lancet 2009;374:86–9.4. Sight Loss and Vision Priority Setting Partnership. Setting priorities

for eye research. Final report; 2013. http://www.sightlosspsp.org.uk5. Stewart R, Oliver S. A systematic map of studies of patients’ and

clinicians’ research priorities. London: James Lind Alliance, 2008.6. Caron-Flinterman J, Broerse JE, Teerling J, et al. Patients

prioritiesconcerning health research: the case of asthma and COPDresearch in the Netherlands. Health Expect 2006;8:253–63.

7. UK Vision Strategy 2013–2018. http://www.vision2020uk.org.uk

10 Rowe F, et al. BMJ Open 2014;4:e004905. doi:10.1136/bmjopen-2014-004905

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doi: 10.1136/bmjopen-2014-004905 2014 4: BMJ Open

 Fiona Rowe, Richard Wormald, Richard Cable, et al. processresults of the research prioritisation surveyPartnership (SLV-PSP): overview and The Sight Loss and Vision Priority Setting

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