Policy Makers & Programme Planners – DR

There is extensive evidence that good control of blood sugar and blood pressure reduce the risk of vision-threatening DR. This requires lifestyle changes, regular monitoring, and adherence to prescribed medication.

Strategies to reduce DR will also help reduce chronic kidney failure, cardiovascular disease and the other complications of diabetes.

The purpose of screening is to detect DR requiring treatment before the patient presents with vision loss. Screening for DR entails detailed examination of the retina. The preferred method is digital retinal imaging. Low-cost imaging systems are available, and allied health professionals can be trained to reliably capture, store, and make a decision about whether DR is present or not, with quality assurance mechanisms provided by a specialist ophthalmologist. People with any DR need to be referred to the next level of health care for diagnosis, and treatment if required.

Screening should start at the time of diagnosis for adult-onset diabetes; screening should start at the onset of adolescence in children with diabetes. Annual screening is recommended for all.

After referral, further diagnostic tests are required to identify those needing treatment. One form of DR is treated by intraocular injection of agents such as Anti-VEGF drugs, which may need to be repeated. New blood vessels need to be treated by laser. More advanced disease requires complex surgery. All patients who have been treated for DR also require long-term follow up.

There is good evidence that early detection and timely treatment preserve vision.

Providing services that are accessible and equitable for DR will impact on all aspects of the health system, including:

• financing
• governance (e.g., National Guidelines for DR)
• capacity building of training institutions and staff at each level of the health system, with task sharing
• providing infrastructure (e.g., dedicated space for screening in NCD clinics) and equipment for screening, diagnosis and treatment
• HMIS to track access, uptake of referrals and the outcome of treatment

Close collaboration and coordination between physicians and eye care providers is also critical, and synergies are needed between National Programme for Control of Blindness (NPCB) and National Programme for Prevention and Control of Cancer, Diabetes, CVD and Stroke (NPCDCS).

Providing equipment for diagnosing and treating DR will strengthen the health system as the same equipment can be used for many other retinal conditions, including Age-Related Macular Degeneration, which will increase in importance as the Indian population ages.

New, low-cost imaging systems, telemedicine, almost-real-time automated image analysis, and new-generation treatment offer hope for the future in the detection and management of DR.

Terms of Reference for Technical Experts Group on Advocacy & Communication for Prevention of Sight-Threatening DR

1. Assess and review existing government policies, government orders/directive orders and identify gaps for advocacy
2. Review draft advocacy plan developed by PHFI for the Trust and amend as necessary
3. Develop an advocacy strategy to support national programmes including an implementation plan
4. Suggest advocacy materials and provide inputs for advocacy including identifying appropriate stake holders
5. Develop a communication strategy and plan for the national programmes on NCD and blindness control
6. Help in developing a resource kit for communication activities
7. Periodically assess the progress towards identified activities and stated timelines
8. Meet periodically to develop the strategy and to monitor progress

List of Members

Terms of reference for Technical Experts Group on developing national guidelines for the prevention of sight-threatening DR, and for detection/screening and management of DR

1. Review existing evidence for prevention, detection/screening and management of sight-threatening DR
2. Review existing guidelines from other countries and adapt to Indian needs for prevention, detection/screening and management of DR
3. Develop guidelines for implementation of screening and management programs for DR
4. Periodically assess the progress towards identified activities and stated timelines
5. Meet periodically to develop the strategy and to monitor progress

List of Members

Terms of reference for Technical Experts Group on capacity building of physicians and their teams for prevention of sight-threatening DR

1. Improving capacity of physicians and their teams to control diabetes to reduce the complications of diabetes, including sight-threatening DR
2. Improve physicians and their teams’ capacities for the detection of sight-threatening DR
3. Develop learning objectives, curricula and evaluation matrix for the skill-up gradation programmes
4. Advice on modalities for capacity building of support staff i.e. counselors/dieticians etc. to reduce the complications of diabetes including retinopathy
5. Periodically assess the progress towards identified activities and stated timelines
6. Meet periodically to develop the strategy and to monitor progress

List of Members

Terms of reference for Technical Experts Group on capacity building of ophthalmologists for management of Diabetic Retinopathy

1. Assess specific needs for capacity building of ophthalmologists for managing Diabetic Retinopathy both in the short term (project period) and the long term (sustainable activities)
2. Assess specific needs for capacity building of ophthalmology technician/optometrists in timely detection and referral of DR
3. Develop learning objectives, competency-based curricula, and assessment methods
4. Periodically assess the progress towards identified activities and stated timelines
5. Meet periodically to develop the strategy and to monitor progress

List of Members

Terms of reference for Technical Experts Group on data management for monitoring and evaluation: IT and HMIS

1. To provide expert guidance on the data management tools required for M & E
2. To review the developed HMIS framework for M & E
3. Periodically review the progress of data collection the monitoring indicators developed in the HMIS framework
4. Formulate ToR for mid-term and final evaluation

List of Members

Terms of reference for Technical Experts Group on review of programme planning and implementation in Trust-supported districts

1. Ratify operational guidelines developed for Trust-supported programmes
2. Review proposals received from mentoring partners
3. Support development of district-level models
4. Provide technical input to mentoring partners
5. Meet periodically to assess need for technical input

List of Members

• State and district NCD and NPCB officers would act as nodal officers in charge for implementing the project in the state and would coordinate all the activities pertaining to the project
• There would be a coordination committee at the state and district level

• State level coordination committee will meet under the chairmanship of Secretary, Health at least twice a year.
• Members will be the Director Health Services, Director Medical Education, Director IIPH Hyderabad, and Nodal officer National Blindness Control programme, NPCDCS and representative of mentoring partners of states and others suggested by the Department of Health and Family Welfare, Government of respective states
• Review the project implementation

• District coordination committee will be established under the chairmanship of the district collector, respective project district
• The committee will meet every quarter with more frequent meetings in the first year, if necessary. Other members would be District Medical and health Officer, DPM, Deputy DMO in charge of NCD and Blindness Control Programme, PHFI Programme consultant in charge of the project and representative of mentoring partner and others suggested by Department of Health and Family Welfare, Government of respective state
• Review the progress of the project implementation activities

1st TEG meeting on Advocacy and Communication Strategy, April 2015

• Terms of References for TEG on advocacy and communication were agreed upon in the first meeting
• Discussion on advocacy and communication strategies and the group came up with a major advocacy strategy, Tasks/Target audience, Communication activities, Materials

2nd TEG meeting on Advocacy and Communication Strategy, October 2015

ADVOCACY

• Establish linkages with other expert groups (TEG 2 – Guidelines, TEG-3/4 IT/HMIS) to know specific tasks/areas that need advocacy
• Emphasis on identification of systemic, behavioural, attitude, economic barriers for the advocacy and communication strategies and Use partner networks in the local advocacy and communication activities
• Data gaps: The group identified issues with gaps in understanding of the literature. The group suggested conducting a targeted/systematic review of Diabetic Retinopathy literature in India with best practices and strategies followed in other countries.

COMMUNICATIONS

• The group advised to ensure the quality of the educational materials that are to be developed. Campaigns and peer groups can be established in the program implementing states
• Conduct workshops in all eight districts regarding the communication strategies. Formation of self-care groups and propagation of information on radio, newspaper. Use of Social media effectively

3rd TEG meeting on Advocacy and Communication Strategy, February 2017

• The Technical expert group members were provided with developed Information Education Communication material on Diabetic retinopathy (posters, leaflet, videos etc) to review by Indian Institute of Public Health staff
• Group members were asked to identify the progressions that should be included in the given material so that they will have larger impact on people

1st TEG meeting on National Guidelines for Diabetic Retinopathy, November 2015

• National Guidelines for Diabetic Retinopathy can be developed in a phased manner, based by adaptating existing guidelines with evidence from India. The scope of the guidelines needs to be finalized, and a committee will define the scope of the guidelines
• Given the wide variation in health systems across India, the guidelines can be aspirational (i.e. would be in place given adequate resources) as well as practical (i.e. the minimum that needs to be in place)
• It is important that the recommendations are implementable, and information collected over the next few months from the Trust supported programme can be used to this end
• A Guideline Development Group and an External Review Group, with appropriate representation, will be convened to take the work forward

2nd TEG meeting on National Guidelines for Diabetic Retinopathy, March 2016

• Reviewed and amendment of PICO (Problem Intervention/Indicator Comparison Outcome) questions listed in the Australian Diabetic Retinopathy Guidelines
• Recommendations – minimum information to be collected as part of generic data collection for diabetics / Non Communicable Disease form
• Develop an online system for routine data collection and pilot test it in the Trust programme
• Modifications to be made in Vision 2020 DR guidelines
• Dr.Rohan Chariwala and Dr. Sishendu Mahato will volunteer to work with the guideline committee to draft the national guidelines
• Scoping committee to be constituted by the experts from the Certificate Course Diabetic Retinopathy course- ophthalmologists, physicians and public health experts
• Prof Clare Gilbert to contact Iris Gordon and Spenser Haddon to explore the opportunities for medical writing expert to draft the guidelines based on inputs from the experts

3rd TEG meeting on National Guidelines for Diabetic Retinopathy, March 2016

• Scoping Committee has prioritized and finalised a draft scope of guidelines
• Dr Rohan Chariwala to work along with Dr Clare. Iris Gordon to develop the search terms for the evidence-base
• Iris to draw up search terms (India; Singapore; Hong Kong; China; Bangladesh; Pakistan; Nepal; Sri Lanka; Thailand; Indonesia; Malaysia; Philippines; Middle East)
• Fixed timelines for the guidelines development – each section has been divided into further sub sections and the committee has assigned the topics to individuals
• Permission letters to be written to the Vision 2020 members seeking permission to update guidelines and also to seek permission of the Australian group and UK group to use/adapt material used in them

4th TEG meeting on National Guidelines for Diabetic Retinopathy, July 2016

• Draft guidelines presented at the 4th TEG meeting
• Recommendations for PICO (Problem Intervention/Indicator Comparison Outcome) questions
• Review of PICO (Problem Intervention/Indicator Comparison Outcome) from other countries reviewed
• Recommendation to convene a guidelines working group: Members of the group to include Dr.Rohan Chariwala, Prof. Clare Gilbert, Dr.Hayden Spencer, Dr. Asim Sil’s Dr. Shirshendu Mahato, Jenny Evans and 1 or 2 physicians
• By the end of August Working Group members to:
  • Ensure remaining chapters are submitted – Rohan to follow up
  • Tabulate PICOs (Indian) and recommendations from other countries – Hayden and Clare
  • Finalise coding of studies from systematic review – Hayden, Iris, Clare
  • Get full pdfs of papers from SLR, by PICO question – Iris and Clare

5th TEG meeting on National Guidelines for Diabetic Retinopathy, February 2017

• Suggestion to add a section on cataract and a section on vitrectomy
• Evidence should be used. Surgical (4.5) and non-Surgical (4.6) should be put under the same section
• Allocation of sections (that are pending)
  • Section 8.5 to be written by Dr.Rajeev Raman
  • Section 8.6 and 8.7 to be written by Dr. Thulasi Raj
  • Section 8.8 Dr. Nikhil Tandon and Dr. Usha Raman
  • Section 8.9 Dr. Bachani
• Recommend an interface between National Programme on Control of Blindness and Non Communicable Disease; build on same lines as diabetes and Tuberculosis
• Costing to be moved to economics chapter
• Section on competency to be a stand-alone chapter
• Identification of external reviewers to review the guidelines. Look at authors of other guidelines. Suggestion: Indian Retina specialists, Dr. Vineet and Dr. Geetha
• Suggestion to have a two-phase review

6th TEG meeting on National Guidelines for Diabetic Retinopathy, 24 May 2019
Endocrinologists – 24 May 2019
Ophthalmologists – 28 May 2019

• Review and finalization of the technical guidelines pertaining to the endocrinology portion and ophthalmology portion by respective experts by means of voting. (Proxy voters were employed to vote on behalf of experts who were unable to be present physically)
• Future plans were discussed and the following action points were realised:
  • Publishing of Technical guidelines
  • Revision of recommendations after 5 years to incorporate the new technological advancements and evidences by then

1st TEG meeting on Capacity Building of Physicians and their Teams for Prevention of Sight-Threatening DR, 4 March 2015

• Discussion on developing a Certificate Course for Evidence-Based Management of DR (CCEDDR) which is renamed as Certificate Course on Prevention of Blindness due to Diabetic Retinopathy (CCPBDR)
• Decision on Academic Partners to design eye care modules
  • Aravind Eye Care
  • Mohans Diabetic Research Institute
  • All India Institute of Medical Sciences, Delhi including RP Centre
• Consideration of capacity building of allied health professionals like optometrists, dieticians for the opportunistic awareness creation on Diabetic Retinopathy

1st TEG meeting Capacity Building of Ophthalmologists, April 2015

• Terms of references for expert group on capacity building of ophthalmologists meetings agreed upon
• Modalities regarding capacity building of the ophthalmologists were discussed

2nd TEG meeting on Capacity Building of Ophthalmologists for Management of Diabetic Retinopathy, June 2015

• Plans and activities for developing medical retina course curriculum finalised
• Discussion on competency-based framework initiated
• Master trainers identified for the teaching capacity building for ophthalmologists
• Suggestions from the experts group members include:
  • Letters to the training institutes need to be sent to know a) their willingness to train in medical retina for Diabetic Retinopathy using a standardized, competency based curriculum, which includes hands-on training, and b) number of candidates they can train a year under National Programme on Control of Blindness sponsorship.
  • Develop a standard certified course for PMOA (Paramedic Ophthalmic Assistants) at vision centres in Primary Healthcare centres

3rd TEG meeting on Capacity Building of Ophthalmologists for Management of Diabetic Retinopathy, September 2015

• Contents of Diabetic Retinopathy manual were discussed
• Abdominal obesity and role of hypertension in Diabetic Retinopathy to be added in the manual
• Format for training, assessment and evaluation were discussed
• Certificate Course on Evidence-Based Diabetic Retinopathy to begin in regional training centers across India. Medical Officers from National Program on Control of Blindness and districts for training were recommended to be candidates for training
• A discussion on whether the manual should include a training for Para Medical Ophthalmic Assistants

1st TEG on Data Management for Monitoring and Evaluation, March 2015

• Terms of references for expert group on data management meetings agreed upon
• Changes suggested to monitoring and evaluation framework. Impact indicators for implementing districts were recommended
• Formats for the monitoring and evaluation framework are to be developed within agreed time lines

2nd TEG on Data Management for Monitoring and Evaluation: Information Technology and Health Management Information System, October 2015

• Data management tools for Diabetic Retinopathy project formulated
• Planning for midterm and final evaluation and criteria for the evaluation and selection of agency for the evaluation in progress

1st TEG meeting on Review Programme Planning and Implementation in Project Districts, July 2015
Medication must be given after screening for Diabetic Retinopathy and Diabetes Mellitus. One on one counselling for patients must be given when health care givers communicate diagnosis and available treatment options to the patients.

• Patients should have ½hr-1hr training where Diabetes Mellitus patients are taught about comprehensive Diabetes Mellitus care. It was also suggested by the group members that developing aa ‘Total diabetic care’ book, by the partners, could be very useful for the patients ( like a hand book consisting of personal details along with medical history) for them to understand the holistic care that is required for the management of diabetes
• Aadhaar number could be used as unique ID to track patients and the same can be made mandatory in all the databases of the implementing partners