Examining the provision of wet Age-related Macular Degeneration (wAMD) services in the UK
Contents
1. Background to the RNIB
1.1 RNIB Group strategy
2. Project background
2.1 About wet Age-related Macular Degeneration (wAMD)
2.2 How will the research be used by the RNIB?
3. Project scope and objectives
3.1. Project scope
3.2. Market research objectives
3.3. Areas to be explored
3.3.1 Desk research
3.3.2 Qualitative research
4. Sample considerations
5. Methodology suggestions
6. Deliverables
7. Timings
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1. Background to RNIB
Royal National Institute of Blind People (RNIB) is the leading charity offering information, support and advice to almost two million people with sight loss.
We are a membership organisation with over 10,000 members who are blind, partially sighted or the friends and family of people with sight loss. Eighty per cent of our Trustees and Assembly Members are blind or partially sighted.
As a campaigning organisation, we fight for the rights of people with sight loss in each of the four nations of the UK.
We also provide expert knowledge to business and the public sector through consultancy on improving the accessibility of the built environment, technology, products and services.
1.1 RNIB Group Strategy
RNIB is mid-way through a 5-year strategy (2009-2014) that has three clear priorities:
· Priority 1: Stopping people losing their sight unnecessarily. This priority focuses on targeting those people most at risk of sight loss and ensuring they receive timely access to diagnosis and treatment
· Priority 2: Supporting independent living. This is comprised of several areas, including reaching people at an early stage of sight loss, improving education and employment and supporting children and adults with more complex needs
· Priority 3: Creating an inclusive society. This priority covers travel, shopping and money, reading TV and technology
The scope of this project relates to the first priority area.
2. Project background
In order to deliver outcomes against goal one, RNIB campaigns to improve access to treatments and service provision for the four main eye conditions (wet Age-related Macular Degeneration (wAMD), Cataract, Glaucoma and Diabetic Retinopathy). All of our work needs a robust evidence base in order to influence high level decision makers including parliamentarians, senior civil servants, local councillors, commissioners of health services, and ophthalmologists.
Throughout the UK, demand for sight saving treatments is increasing as the population ages. Hospital budgets are tight and capacity issues in eye clinics are hampering service delivery. In England, the NHS is faced with its own pressures of delivering £20 billion of efficiency savings while implementing major structural reforms; coupled with a shift to local decision making which could increase postcode prescribing and exacerbate health inequalities.
In order to tackle these growing problems, RNIB is keen to undertake research to increase its knowledge and understanding of wAMD service provision in the UK from the commissioner, clinician, patient and carer perspectives. This is particularly timely due to the changing pressures on the health service outlined above. The project will also be used to consider how to cut waste, increase innovation and improve the patient journey - this should provide a compelling vision (based on evidence) of what the future of wAMD services could look like and inform future RNIB campaigning work.
2.1 About wet Age-related Macular Degeneration (wAMD)
Age-related macular degeneration (AMD) is the leading cause of blindness. An estimated 500,000 people in the UK suffer from AMD with 40% of these over the age of 75.
Macular degeneration affects the central vision and can make it difficult to carry out day-to-day activities such as reading, watching television and driving.
Although there is currently no treatment available for the more common, slower progressing 'dry' form of AMD, there are safe, approved treatments for the less common 'wet' form, which can cause devastating sight loss in as little as three months.
Access to treatment is vitally important for those with wet AMD and we believe that where affective treatments exist they should be freely available to those that need them on the NHS.
2.2 How will the research be used by the RNIB?
Research findings and recommendations will inform future campaigning activities at the RNIB aimed at improving patient outcomes and service delivery. Therefore they must be actionable. The findings will help RNIB identify areas of unmet need in wAMD service provision and put us in a stronger position to challenge service providers and disseminate good practice based on commissioner, clinicians, user and carer experiences.
Findings will be of interest to a range of internal and external stakeholders including parliamentarians, public health professionals, local councillors, commissioners, clinicians, professional groups (such as the Royal College of Ophthalmologists), patient groups, patients and carers.
The findings and recommendations will be accompanied by a comprehensive communications and public affairs plan to ensure they are disseminated far and wide. The aim will be to change attitudes among stakeholders in order to improve service provision. This should be possible as credible and authoritative stakeholders will be involved throughout the process and 'buy into it'.
3. Project scope and objectives
3.1 Project scope
The project will cover:
· All four countries of the UK
· Interviews will take place with Commissioners, clinicians, patients and carers
The project will not cover:
· Treatment of the dry form of Age-related Macular Degeneration
3.2 Market research objectives
The following market research objectives are defined for this project:
a. To provide an overview of wAMD and its treatment in the UK including prevalence; diagnosis and management; the personal, social and economic impact of the condition - including cost to the UK economy. It will also review the policy context within which services are being delivered.
b. To examine service delivery from the commissioner and clinician perspective and identify ways to tackle bottlenecks in the system. Focus should be placed on how treatment policies and guidance translate into practice; local issues and variation; resolving capacity issues; and increasing innovation in service delivery.
c. To identify stages of the patient pathway (from diagnosis to treatment to possible social care) where more support may be required - for example, through improved information or emotional support. This includes understanding the impact of different service delivery models on patients' perceptions of their journey. Personal and social goal setting should also be assessed to explore the effectiveness of treatment.
d. To assess the role of the carer (often a family member) and identify mechanisms to reduce the psychological, physical and financial burden of looking after a patient with wAMD.
3.3. Areas to be explored
The research must be impartial/objective and not pre-determined.
3.3.1 Desk research
The areas outlined below form the basis of our thinking around initial desk research. The aim is to provide a "state of the nation" style account of wAMD service provision in the UK. It will provide an overview of what has been done before on these issues, so they can be incorporate into the research.
Prevalence and incidence of wAMD in the UK
· Statistics broken down by age and gender
Policy context
· Summary of the policy context within which services are being delivered
Cost of sight loss and wAMD
· Personal cost
· Social care costs
· Impact on the UK economy
Diagnosis and management of wAMD in the UK
· How wAMD is diagnosed referred and treated in each of the four countries of the UK
3.3.2 Qualitative research
The areas outlined below are initial suggestions that will be refined once the desk research has been completed.
Commissioner perspective
· What factors are taken into account when commissioning services for wAMD?
· What do you believe works well with current service provision?
· What is currently problematic with service delivery (i.e. bottlenecks in the system, capacity issues)?
· What could be improved in the future (i.e. better data collection)?
· How can innovation be brought into service delivery? Identify examples of best practice and innovative solutions to providing high quality services. This should provide an in-depth understanding of the key drivers for commissioners and clinicians, for example around personalisation, commissioning, integration of health and social care and use of technology.
· Comment upon the treatment of wAMD in the wider context of all ophthalmology services
· How are the health reforms in England impacting on service delivery - both in terms of threats and opportunities? (people in devolved nations may say how this could affect services in their countries)
· Comment upon local issues and service variation
· Is the current treatment policies and guidance translating into practice?
· Comment upon wAMD as a public service issue
Clinician perspective
· What do you believe works well with current service provision?
· What is currently problematic with service delivery (i.e. bottlenecks in the system, capacity issues)?
· How can you improve services for your patients in future?
· How can innovation be brought into service delivery? Identify examples of best practice and innovative solutions to providing high quality services. This should provide an in-depth understanding of the key drivers for commissioners and clinicians, for example around personalisation, commissioning, integration of health and social care and use of technology.
· Comment upon the treatment of wAMD in the wider context of all ophthalmology services
· How are the health reforms in England impacting on service delivery - both in terms of threats and opportunities? (people in devolved nations may say how this could affect services in their countries)
· Comment upon local issues and service variation
· Is the current treatment policies and guidance translating into practice?
· Comment upon the carer issue
Patient perspective
· Outline the steps that happened from diagnosis to treatment (i.e. get an overview of the patient pathway - i.e. understanding the impact of different service delivery models on patients' perceptions of their journey)
· At what stages in your journey could you have had more support (e.g. through improved information or emotional support)
· Has personal and social goal setting helped with the effectiveness of treatment?
Carer perspective:
· Outline how you have helped the person with wAMD
· What mechanisms could reduce the psychological, physical and financial burden of looking after a patient with wAMD?
4. Sample considerations
The sample will be independent and robust with a good geographical spread across the UK. These suggestions will be refined once the desk research has been completed.
Commissioners:
· In England this includes new commissioners sitting in the Clinical Commissioning Groups
· Currently commissioning services for patients
Clinicians:
· Senior figures in the major eye hospitals such as the Western Eye etc. These need to be, for example, lead wAMD consultant
· Junior doctors can also be interviewed in the process.
· Currently treating patients
Patients:
· wAMD affects older people - 60 above in white population. The sample should be representative of this. More women than men are affected by wAMD.
· Recently diagnosed and treated (within the last few years)
· Men and women
· All ethnicities and
Carers:
· These should be close family members or friends of someone who has had wAMD.
· Recent experience (within the last few years)
5. Methodology suggestions
The work will have three stages - desk research, qualitative fieldwork, and analysis of findings / report write-up.
Desk Research:
· Online research will be undertaken to identify the prevalence, diagnosis and management, service delivery issues around the treatment of wAMD, the policy contest within which services are being delivered and the patient journey. Findings will inform the subsequent field work for this project.
Qualitative research:
This will include:
· Forty in-depth interviews with commissioners across the UK - ensuring commissioners in PCTs and Clinical Commissioning Groups are covered in England; Local Commissioning Groups in Northern Ireland; and NHS Boards in Scotland and Wales.
· Forty in-depth interviews with clinicians across the UK - covering the major eye hospitals and some senior consultants. This group will also cover GPs and Optometrists.
· One hundred in-depth interviews with patients across the UK.
· One hundred in-depth interviews with carers in across the UK.
For each type of depth interview (by each country in the UK) a detailed topic guide will be agreed with RNIB covering issues, attitudes, opportunities, drivers and barriers.
Nvivo qualitative research software will be used to identify patterns and themes in the research findings.
A full analysis of the findings will be undertaken and conclusions / recommendations written-up in a final report. Some findings will be displayed in graphical form:
6. Deliverables
The deliverables relating to this project are outlined below:
· An interim report highlighting findings from the desk research
· 280 tele-depth interviews with commissioners, clinicians, patients and carers
· A full written report at the end of the project containing findings, conclusions and recommendations
· Data tables in excel format
9. Timings
The desk research and majority of the fieldwork will be carried out by the end of August 2012. Headline findings will be presented at the political party conferences in England in late September (the first one commencing on Saturday 22 September).
Research timetable:
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