Promoting Knowledge Exchange Across the Sight Loss Sector

Lead Research Organisation: National Centre for Social Research
Department Name: Research Department

Abstract

Almost two million people in the UK live with sight loss that significant impacts on their daily lives. This number will increase dramatically in the coming decades, driven by our aging population. People with sight loss experience lower levels of participation and increased restrictions across many aspects of their lives, both compared with other disabled people and compared with the general population (McManus and Lord, 2012).

Analysis conducted by RNIB (with NatCen Social Research) found that people with sight loss:
- Had lower levels of wellbeing and self-confidence, and lower satisfaction with health
- Experienced more difficulties accessing health services
- Were more likely to experience financial hardship
- Faced more restrictions to participation in education and employment
- Reported less choice about how they spend their free time
- Faced major barriers to travel and shopping.

A wide range of organisations, from large national charities to small local voluntary groups, work to improve circumstances for people with sight loss. 97 local sight loss charities are members of Visionary, the umbrella organisation for local sight loss organisations. VISION 2020 UK, an organisation bringing together national sight loss organisations, has a further 52 members. Both actively endorse this bid.

Organisations need evidence to develop services and secure funds to deliver those services, but many within the sector highlight lack of research awareness, skills and resources as a critical issue. We believe that it is vital that good quality survey data, and social research in general, be communicated to and understood by a wide range of people across the sight loss sector, to enable the sector to:
- Develop services on the basis of evidence of need.
- Make an evidence-based case in funding applications and fundraising activity.
- Inform their internal organisational strategies and priorities.
- Generate authoritative statistics for campaign work.
- Avoid unnecessary external research commissioning.
- Identify gaps in their evidence base.
- Lobby or influence the policy and practice of public and private organisations from a position of informed authority.

Our programme of work involves five Work Strands:

Work Strand 1 - Knowledge exchange across the sector. Eight regional workshops and networking events to examine local sight loss organisations' evidence needs and to provide training in how existing datasets and research could meet those needs.

Work Strand 2 - Professional and workforce development. A bespoke social research training programme for researchers, policy officers and service managers in the national sight loss sector. Skills developed would include: conducting rapid evidence reviews, principles of research design and specification, processes for data acquisition, data management and basic analysis skills, and techniques and tools for data visualisation. A new post for a formerly unemployed blind or partially sighted trainee will be created, to join the project team to help deliver these work strands.

Work Strand 3 - Knowledge Hub. A centre of knowledge and expertise, embedded at RNIB, offering sight loss organisations a point of contact for: data requests, advice on datasets or social science research studies to use, whether research already exists that meets their needs, supporting people to do further analysis themselves and, where necessary and possible, conducting or arranging further analysis.

Work Strand 4 - Collaboration and networking. A research network focused on sustainability for the project by developing collaboration and cooperation to help inform or scope new research priorities.

Work Strand 5 - Project management and governance. We are organisations with a strong track record of collaborating on projects and networking together. We will build on this, maintain tight project management, and evaluate the programme with clear measures of success.

Planned Impact

This project has a wide range of beneficiaries, with impacts felt within months of the project beginning and continuing long after the project ends.

People with sight loss - in general
Local and national sight loss organisations will be acting on evidence that is routed in the experiences of blind and partially sighted respondents. The sight loss sector will become more engaged with data about the health and financial wellbeing of people with sight loss. Improved performance of sight loss organisations (more efficient, less wasteful of resource, more relevant and better informed) will enable them to better equip people with sight loss to engage with and influence local issues that are important to them.

People with sight loss - specific
A proportion of the members of staff taking part in both the professional and workforce development will have personal experience of sight loss, as does one member of the core team. Thus all products and governance will be accessible to allow full participation. Furthermore, one unemployed person with sight loss will gain a paid job, work-related training, and a combination of skills that will enable him/her, should they want to, to continue to contribute valuable skills relevant to the future performance of the sector.

Local organisations working in the sight loss sector
Will benefit from being better informed about the profile and the needs of their client group, having greater authority for lobbying because they are armed with good quality evidence, better prepared to demonstrate need in applications for service funding, and having a more engaged and better connected workforce.

National organisations working in the sight loss sector
Will gain financial efficiency from being able to bring some social research work in-house, informed targeting and better specfication for any work commisioned externally, and greater connections with others using sight loss research and data.

The sight loss sector as a whole
Will gain from improved connections between organisations operating at local, regional and national levels.

NatCen Social Research
Gains in terms of developed familarity with secondary analysis resources and a greater understanding of the research needs of the sight loss sector and third sector organisations more widely, at local and national level. Also in terms of ensuring research outputs are accessible and usable by the range of sight loss sector organisations.

Other research providers
Academics and other research providers benefit from better specified research tenders, a developed understanding of the research needs of third sector organisations, and developed connections with others working in related fields.

Other third sector organisations
This project explicitly seeks to develop models of working that have direct relevance to promoting knowledge exchange and social research utilisation in sectors working to support other client groups.

Public sector and NHS commisioners
Will benefit from better evidenced funding applications for public services that more accuractely reflect the needs and preferances of people with sight loss.

Wider public
Campaign and awareness advertising will be better informed with authorative evidence based on existing UK research. Money donated by the public to support sight loss charities will therefore be better targetted.

Publications

10 25 50
 
Description This Knowledge Exchange grant supported an extraordinary year of collaboration, bringing together a now close-knit project team of sight loss research professionals from different organisations (including RNIB and Pocklington Trust) with methodologists from NatCen Social Research. We continue to work together (albeit to much less extent), four years later.

Together we raised the profile of and carried out training in applying data and research on sight loss with: a) professionals working in national and umbrella sight loss organisations; b) professionals working in local sight loss organisations; c) generalist researchers; and d) a blind trainee.

We achieved this through several strands of linked work:
i. A programme of day-long regional workshop/conferences aimed at people working at the local level, in addition to other professional development events.
ii. Two sets of five day social research training programmes, conducted over a six-month period, with people working at the national level.
iii. Development and continuation - sustainable because integrated into Pocklington Trust and RNIB's own communication infrastructure - of a LinkedIn group providing ongoing advice and support, and an email circulation group (now with more than 7,000 registered recipients) of people who regularly receive sight loss Research News.

Through our work on this knowledge exchange grant we learnt about the research and support needs across the range of groups of people that we were working with (at local, regional, national level; without and outside of the sight loss sector) - this has informed how we accessibly pitch and most usefully target ongoing work in this area.

One key transferable finding for future public engagement and knowledge exchange activity has been the key importance of engaging at the LOCAL level. This came back strongly in our evaluation survey and depth interview work with participants from the regional seminars. They particularly appreciated the opportunity to develop local networks, meeting people working in related fields and in neighbouring organisations.
Exploitation Route - We have further work in the sight loss sector to do: promoting availability of and findings from analyses of the latest waves of key longitudinal survey datasets (including Understanding Society and the Millennium Cohort Study); updating the Sight Loss Data Tool; training more central sector professionals and conducting further professional development events; ongoing maintenance of the network; and applying learning to the support of another blind or partially sighted trainee.
- We are also continuing to promote sight loss as an area of substantive research for generalist social researchers to address, and a topic that survey researchers should include good questions on when survey samples are sufficiently large to support this focus in analysis.
- But a key application will be to apply the model developed to other sectors, in particular working with other organisations with a research remit in different areas of the disability sector, such as hearing impairment.
Sectors Communities and Social Services/Policy

URL http://www.rnib.org.uk/professionals/knowledge-and-research-hub/knowledge-exchange-network
 
Description The Knowledge Exchange Network for the Sight Loss Sector was developed as a result of this ESRC grant (which ended four years ago) and it continues to thrive. Details can be found here on this website: www.rnib.org.uk/professionals/knowledge-and-research-hub/knowledge-exchange-network.
First Year Of Impact 2014
Sector Communities and Social Services/Policy
Impact Types Societal

 
Description Evaluation feedback from participants
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact This grant has involved a significant training programme for national sight loss sector professionals and regional workshops for many local sight loss sector professionals, sustained with ongoing data support, networks, and access to data tool. Throughout the duration of the grant we have captured feedback, and are now collecting further evaluation feedback which we currently analysing to identify nature of impact. Feedback so far has been extremely positive and includes: changed practice, changed awareness and greater knowledge and skills.
 
Title Sight Loss Data Tool 
Description This grant has directly contributed to the development and refinement of the RNIB's Sight Loss Data Tool. This is a publicly shared Excel database which holds national and local data on sight loss, and enables local organisations to profile sight loss data for their own areas or regions. It provides information at a local level both about people with, and at risk of, sight loss. 
Type Of Material Improvements to research infrastructure 
Year Produced 2013 
Provided To Others? Yes  
Impact The tool aims to ensure that the needs of these people are taken into account by service providers whilst planning services and producing related documentation, such as the Joint Strategic Needs Assessments (JSNAs). In addition to registration data, the data tool also includes information from epidemiological sources, Hospital Episodes Statistics, NASCIS, Office of National Statistics, etc. The Sight Loss Data Tool is a key resource for the sight loss sector and has been used by over 3,000 individuals since it was launched in 2013. Stuart Clayton, the Chief Executive of Galloway's, provided the following feedback after using the Sight Loss Data Tool: "I have used the data to influence the Lancashire LEHN in the development of the sight loss pathway, the Health and Wellbeing Boards regarding the general prevalence of sight loss and in Sefton we included data in our bid to the CCG small grants programme and as a consequence we were awarded ?40k for the development of a new early intervention project. "The sight loss data tool has enabled me to speak with confidence about the prevalence of sight loss and the associated costs at recent CCG AGM's and in turn this has raised the profile of sight loss in Lancashire and Sefton. The RNIB sight loss data tool is an excellent capacity builder for organisations such as Galloway's to raise the profile of sight loss in a challenging and ever changing environment." 
URL http://www.rnib.org.uk/knowledge-and-research-hub-key-information-and-statistics/sight-loss-data-too...
 
Title Promotion and refinement of the RNIB Sight Loss Data Tool 
Description This is an Excel data tool created by RNIB and further refined and promoted locally through the Knowledge Exchange Network (KEN) events, in particular through the regional events where the tool's functionality for presenting (and modelling) data at the local level was show cased, feedback obtained on how to improve the Tool was collected, and local sector professionals were provided with a tailored report for the region or local authority where they work. 
Type Of Material Data handling & control 
Year Produced 2013 
Provided To Others? Yes  
Impact Local organisations have feed back that improved data that is tailored to their area has helped with planning need at the local level and with making funding applications. 
URL http://www.rnib.org.uk/knowledge-and-research-hub-key-information-and-statistics/sight-loss-data-too...
 
Description Partnership between the Knowledge Exchange Network project team and Visionary 
Organisation Visionary
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Visionary is the umbrella organisation that brings together local sight loss organisations and individual members. the national sight loss organisations and the national research oprganisation that are the grantholders for this study developed closer working with Visionary - including presenting at several of thier regional conferences as well as their national conference in Glasgow in September, at which we also had a stall.
Collaborator Contribution We have developed and strengthened the links between national and local sight loss organisations, with particular emphasis on data availability and the role of research.
Impact Informal ongoing data support provided by national representatives to local organisations; and national representaives have learnt about local data needs. Disciplines involved are primarily in social policy and design of social services.
Start Year 2013
 
Description LinkedIn group 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The LinkedIn group is affliated with the umbrella Knowledge Excahnge Network - see other entry.

The LinkedIn group has only just been set-up, still less than 50 members, but already posting and sharing information.
Year(s) Of Engagement Activity 2014
 
Description Regional seminar (Birmingham 9/9/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact day long event on promoting the availabilty and application of data in sight loss sector

lots of engagement, questions and networking
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/researchandknowledge/Sightlossguidanceandinformationforprofessio...
 
Description Regional seminar (Bristol) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This was one of a series of day-long regional workshops where we engaged with practitioners and other professionals working in local sight loss sector organisations about thier use of data.

We have received information for modification of the RNIB sight loss research tool, and helped with other data requests, especially for local area planning and for funding applications.
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/OneStopCMS/Core/SearchResults.aspx?SearchQuery=ken
 
Description Regional seminar (Cardiff 9/6/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact day long conference/workshop/presenttaions on data availability and application

lots of engagement and subsequent requests for more information
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/researchandknowledge/Sightlossguidanceandinformationforprofessio...
 
Description Regional seminar (Edinburgh 22/10/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact day long event raising the awareness of data availability and application for sight loss sector

lots of engagement, networking and requests for more information
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/researchandknowledge/Sightlossguidanceandinformationforprofessio...
 
Description Regional seminar (London 14/4/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Brining people together and sharing knowledge

Change in practice
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/researchandknowledge/Sightlossguidanceandinformationforprofessio...
 
Description Regional seminar (London 14/7/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact day long conference on data availability and application for sight loss sector

lots of engagement, questions, debate
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/researchandknowledge/Sightlossguidanceandinformationforprofessio...
 
Description Regional seminar (Preston 12/5/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact To share information and support local networking. To raise the profile of data available and applications.

Changed in practice
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/researchandknowledge/Sightlossguidanceandinformationforprofessio...
 
Description Regional seminar (York) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact TO raise aware of the availability and application of data

we have had requests for more information - and very positive feedback
Year(s) Of Engagement Activity 2014
URL http://www.pocklington-trust.org.uk/researchandknowledge/Sightlossguidanceandinformationforprofessio...
 
Description Seminar with sight loss sector CEOs (London 25/3/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact A session with CEOs of sight loss charities about how they can access and use data to support the running of their organisations and the delivery of their services to people with sight loss.

positive feedback about relevance and scope for application
Year(s) Of Engagement Activity 2014
 
Description Seminar with sight loss sector CEOs (York 27/3/14) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact A session with CEOs of sight loss charities about how they can access and use data to support the running of their organisations and the delivery of their services to people with sight loss.

Change in practice reported - esp around intention to collect evaluation data.
Year(s) Of Engagement Activity 2014
 
Description Sight Loss Knowledge Exchange Network 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The Knowledge Exchange Network for the Sight loss Sector is up and running. The network ensures the sustainability of the overall project by linking to the regional seminars, training, conferences and other events organisaed through this project, and other sight loss sector professionals, together and providing them with tools and resources on RNIB's Knowledge Hub (www.rnib.org.uk/research), Pocklington, NatCen and other organisations' sight loss research, regular research news updates, access to events, and a LinkedIn group to share and discuss ideas. Current membership is at 160 and growing weekly.

improved connections and requests for information. Evalusation to identify whether and what impacts is currently underway.
Year(s) Of Engagement Activity 2014
 
Description Workshop at the Social Research Association annual conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The SRA is the key organisation linking social research professionals. We ran this well-attended workshop at the SRA annual conference in order to reach social research generalists to a) describe our approach to public engagement and to encourage other researchers to similarly engage more widely and b) to raise awareness among social researchers of sight loss as a substantive issue to examine in research.



The discussion was very lively and we have been asked to write up the Knowledge Exchange Network project as an example of a successful approach to public engagement in the SRA Research Matters magazine.

The presentation will also be archived on the SRA website (url provided below).
Year(s) Of Engagement Activity 2014
URL http://the-sra.org.uk/events/archive/