Increasing eye research capacity and capabilities to tackle the burden of blindness in India: a research-based UK-India Collaboration (ORNATE INDIA)

Lead Research Organisation: Moorfields Eye Hosp NHS Foundation Trust
Department Name: NIHR BMRC for Ophthalmology

Abstract

India is home to over 15 million blind people. Diabetes is a global epidemic but India is one of the top 3 countries most affected with 69 million people diagnosed with diabetes. Diabetic retinopathy is the most common complication of diabetes, whereby blood vessels in the retina leak or die and, if left untreated, this leads to visual loss. Sight threatening diabetic retinopathy (STDR) is the leading cause of blindness in the working age group causing loss of productivity, affecting individual households and the national economy. Despite a fast growing economy, a billion people in India live below the poverty line. Diabetes may result in poverty and poverty is associated with diabetes. Therefore, unless the complications of diabetes are identified early and treated, the impact of blindness on the quality of life and productivity of the Indian population will continue to have a negative impact on the nation's economy. Annual screening of all people with diabetes with retinal photography and prompt treatment of STDR has been shown to decrease the rate of blindness in the UK. However, the technology involved is costly, requires trained manpower and is impractical as a method for screening 69 million people in India annually, when the major proportion of health expenses have to borne by the patients.
By increasing research capacity and capability through this programme, we aim to initiate systematic diabetic retinopathy screening in India through research and evaluate innovative technologies that can accurately identify patients at risk of blindness due to STDR close to home. These technologies can be applied in all DAC listed countries with prospects of reverse innovation in the UK.
The range of research capability activities (SDG Goal 4) and capacity building in India is aimed at better patient outcomes (SDG Goal 3), developing a workforce with quality education (SDG 4), enhancing sustainable livelihoods (SDG Goal 8) and contributing to India's and the UK's work towards an efficient value based healthcare. Firstly, we will introduce population based diabetic retinopathy screening in India and evaluate whether a hand-held camera with smartphone technology and automated grading is feasible in both India and the UK instead of the standard costly cameras and trained manpower employed in the UK currently. We expect more population coverage of retinal screening with this technology and more patients to be referred for treatment. The research capability at the referral hospitals will also improve from this programme with new quality standards being set for treatment.
Secondly, we will develop and validate a blood test of a panel of established markers that can detect STDR and other complications of diabetes with the aim to translate into clinical practice. This will allow patients to monitor their own blood tests for STDR. This has the potential to revolutionise the way people with diabetes are monitored for STDR and other complications globally, empower patients and health care workers with new knowledge, improve research capability in India and the UK, improve research capacity in India and improve the global economy in terms of sustained health, industry and innovation and decreasing inequality in terms of access to healthcare. The programme has the potential to change the landscape of diagnosing and triaging STDR globally. In addition, development of a diabetic retinopathy research network of researchers in India will ensure scalability and sustainability of world-class research in India. These research projects will have secondary benefits to the UK in terms of increasing research capability and reverse innovation. Moreover, the programme will also provide comparative cost-effectiveness data of current standard of care versus these newer technologies to inform national guidelines committees and policy makers globally.

Technical Summary

India is home to over 15 million blind people. Diabetes is a global epidemic but India is one of the top 3 countries most affected with 69 million people diagnosed with diabetes. Diabetic retinopathy is the most common complication of diabetes, whereby blood vessels in the retina leak or die and, if left untreated, this leads to visual loss. Sight threatening diabetic retinopathy (STDR) is the leading cause of blindness in the working age group causing loss of productivity, affecting individual households and the national economy. Despite a fast growing economy, a billion people in India live below the poverty line. Diabetes may result in poverty and poverty is associated with diabetes. Therefore, unless the complications of diabetes are identified early and treated, the impact of blindness on the quality of life and productivity of the Indian population will continue to have a negative impact on the nation's economy. Annual screening of all people with diabetes with retinal photography and prompt treatment of STDR has been shown to decrease the rate of blindness in the UK. However, the technology involved is costly, requires trained manpower and is impractical as a method for screening 69 million people in India annually, when the major proportion of health expenses have to borne by the patients.
By increasing research capacity and capability through this programme, we aim to initiate systematic diabetic retinopathy screening in India through research and evaluate innovative technologies that can accurately identify patients at risk of blindness due to STDR close to home. These technologies can be applied in all DAC listed countries with prospects of reverse innovation in the UK.
The range of research capability activities (SDG Goal 4) and capacity building in India is aimed at better patient outcomes (SDG Goal 3), developing a workforce with quality education (SDG 4), enhancing sustainable livelihoods (SDG Goal 8) and contributing to India's and the UK's work towards an efficient value based healthcare. Firstly, we will introduce population based diabetic retinopathy screening in India and evaluate whether a hand-held camera with smartphone technology and automated grading is feasible in both India and the UK instead of the standard costly cameras and trained manpower employed in the UK currently. We expect more population coverage of retinal screening with this technology and more patients to be referred for treatment. The research capability at the referral hospitals will also improve from this programme with new quality standards being set for treatment.
Secondly, we will develop and validate a blood test of a panel of established markers that can detect STDR and other complications of diabetes with the aim to translate into clinical practice. This will allow patients to monitor their own blood tests for STDR. This has the potential to revolutionise the way people with diabetes are monitored for STDR and other complications globally, empower patients and health care workers with new knowledge, improve research capability in India and the UK, improve research capacity in India and improve the global economy in terms of sustained health, industry and innovation and decreasing inequality in terms of access to healthcare. The programme has the potential to change the landscape of diagnosing and triaging STDR globally. In addition, development of a diabetic retinopathy research network of researchers in India will ensure scalability and sustainability of world-class research in India. These research projects will have secondary benefits to the UK in terms of increasing research capability and reverse innovation. Moreover, the programme will also provide comparative cost-effectiveness data of current standard of care versus these newer technologies to inform national guidelines committees and policy makers globally.

Planned Impact

This programme consisting of 5 work-packages will have impact in several areas:
The collaboration between the UK and India has significant global impact as the outcomes of the work-packages can be applied to all DAC listed countries and have the potential to promote economic performance globally.
Impact on decreasing global inequality to access to healthcare: The technologies developed in this programme and the validation of the simple Madras Diabetes Research Foundation - Indian diabetes risk scores in other ethnic groups will have significant impact in triaging people with diabetes at risk of visual loss and other complications of diabetes. The impact will be seen particularly in DAC listed countries as current technologies are too costly for these countries. Therefore, we will reduce the gap in healthcare access between developed and developing countries and the impact will begin to be seen before the lifetime of the project. The early detection of sight threatening complications will result in earlier treatment and decrease in risk of blindness with consequent improved productivity and global economic growth. In the long term, we expect a significant decrease in the global expenditure on diabetes. The programme will also have significant impact on innovations and businesses due to the potential commercialization and exploitation of the technologies and is expected during the lifetime of the grant. Our success in initiating diabetic retinopathy screening in different regions in India through research capability and capacity will have an impact on policies and guidelines on diabetes and diabetic retinopathy in India at least at state-level before the lifetime of the grant. Health technology assessments of these technologies is expected in both the UK and India and this will have an impact on the roll out of these technologies into clinical practice globally. We will start our work with the International Diabetes Federation as soon as the scientific outputs are ready. We also expect the diabetes and diabetic retinopathy guidelines in the UK to be updated. Reverse innovation in the UK is expected with the rolling out of technologies to people who cannot access screening services in the UK due to co-morbidities in the first instance. Increased research capability in the UK will result in more research outputs in this field and formation of more multidisciplinary teams and partnerships in this field during and after the lifetime of the grant. The societal impact of increased knowledge and skills, increased public awareness and public education will be seen during the lifetime of the grant with more screening and treatment of patients, more jobs, more empowerment of patients to look after their own health by self-screening for complications. This can be measured from the improved reporting to the National programme of blindness and National programme of non-communicable diseases. The project will also impact on the effectiveness of the public sector hospitals by changing the existing organisational cultures and priorities on research. The legacy of knowledge and capacity from this grant together with government willpower will ensure the sustainability and scalability of diabetic retinopathy management throughout the state after the lifetime of the grant. Most importantly, this programme will have a significant impact on the health of the population with the availability of the tools to screen both for sight loss as well as other complications of diabetes. Impact of partnerships and the diabetic retinopathy research network will be significant and appreciated globally. The sustainability and scalability of research in diabetes due to this India-UK collaboration will be the lasting legacy of this grant and will be measured by the increase in scientific outputs, successful grants and new partnerships in this field.

Publications

10 25 50
 
Description Kerala Public Health Strategy
Geographic Reach Asia 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Deciphering AMD by deep phenotyping and machine learning (The PINNACLE study)".
Amount £4,200,000 (GBP)
Funding ID 210572 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 11/2018 
End 11/2021
 
Description Optos Plc 
Organisation Optos plc
PI Contribution The ORNATE-India grant is evaluating ways in which we could increase research capability and capacity in India to identify people at risk of visual loss due to diabetes. Therefore, we have planned a few studies in India that are of national significance.
Collaborator Contribution The Optos Plc is a company that manufactures wide angle retinal imaging cameras at approximately £60,000 per camera. They have approved to donate us 4 cameras for this project in India at no costs.
Impact It is collaborative with 4 institutions in India.
Start Year 2018
 
Description Public Health Foundation of India 
Organisation Public Health Foundation of India
Country India 
Sector Public 
PI Contribution The ORNATE-India grant is increasing education on the management of diabetic retinopathy in India.
Collaborator Contribution The Public Health Foundation of India have produced educational materials on diabetic retinopathy management that they will contribute to this grant. The Certificate Course in Evidence Based Management of Diabetic Retinopathy CCDR Cycle IV is four modular joint certificate program designed, delivered and implemented by Public Health Foundation of India (PHFI), In Cycle IV, 128 primary care physicians were trained for screening, diagnosis and management of diabetic retinopathy in India.
Impact The Certificate Course in Evidence Based Management of Diabetic Retinopathy CCDR Cycle IV is four modular joint certificate program designed, delivered and implemented by Public Health Foundation of India (PHFI), In Cycle IV, 128 primary care physicians were trained for screening, diagnosis and management of diabetic retinopathy in India.
Start Year 2018