Impact case study database

The beneficiaries of the research findings include NHS Trusts, the Care Quality Comission, health visitors, midwives, nurses and managers , private providers, voluntary sector organisations, and patients. The findings also informed developments in the Czech Republic.

The impact can be summarized under two headings: ‘Professional guidance for managers and practitioners’, and ‘Increased compassionate practice and emotional resilience’.

Professional guidance for managers and practitioners

Through her work (2013-2014) with NHS Trusts across England supported by the Department of Health, Health Education England (HEE) and the Institute of Health Visiting (IHV), Pettit promoted compassion and compassion resilience for health visitors and midwives as a vehicle for better compassionate working, leading to a novel model of compassionate resilience [R1] and publication of key national guidelines for England by the Institute of Health Visiting (IHV) for practitioners and for managers (2015) [E1]. This work also contributed to new guidance from NHS England (2017) relating to better midwifery supervision and practice and commended by the Chief Nursing Officer for England [E2]. These activities were instrumental in subsequent research by Pettit and McVicar [R2, R3] which translated into workshops on Compassion Focused Therapy to train managers, clinicians and health and social care practitioners to promote compassion and increase compassion resilience. The training is being adopted by unit managers for their staff CPD training, for instance into Perinatal and Child Units at Mid-Essex Hospital Trusts [E3].

From Wilson’s work with colleagues at Cambridgeshire and Peterborough NHS Foundation Trust (CPFT), endorsed by the NIHR, the Care Quality Commission (CQC) highlighted how PROMISE has created a positive and therapeutic culture across mental health wards at Cambridgeshire and Peterborough NHS Foundation Trust (CPFT). PROMISE was cited in recommendations in guidance to the Mental Health Act, and features as a CQC example of good practice to help mental healthcare providers improve support for patients [E4] and has provided a significant contribution to a blueprint for compassion and dignity for mental health patients. The report also identified that the success of PROMISE underpinned a Trust-wide mapping exercise in 2015-2016 that identified 200 ideas and new initiatives that were disseminated across the Trust by managers to ensure that they were owned by frontline staff. The report noted that changes to practice resulted in high overall satisfaction scores across the adult inpatient wards.

In 2016 PROMISE was integral to the global launch of PROMISE Global at the World Psychiatric Association conference in Cape Town and established in South Africa, Australia, Czech Republic, and USA [E5]. In 2019 it informed the main source of evidence regarding restraint in Acute Mental Health Care in the Czech Republic’s national mental health care plan [E6].

Increased compassionate practice and emotional resilience

Based on the work leading to the NHS guidance [E1, E2], and subsequent research [R2,3], Pettit has delivered training workshops in the NHS Eastern region including, since 2015, Homerton University Hospital NHS Foundation Trust, Mid Essex Hospital Services NHS Trust (now Mid and South Essex NHS Foundation Trust), Essex Partnership University Trust (EPUT), NE London NHS Foundation Trust, and Essex Clinical Commissioning Groups, and also through private training providers Virgin Healthcare and Karitane. Attendance, booked through the University, identifies 50+ attendees per year [E7(i)] and has included psychiatrists, psychologists, nurses, social workers, and practice managers. The workshops apply the reflective approach utilised in the research by focusing on mindfulness and self-compassion, underpinned by the Compassionate Mind Model (CMM). Outcomes have been adopted by practioners [E7(ii)] and by staff development managers in NHS Trusts. For example in the Perinatal and Child Unit of Mid- and South Essex Partnership Trust the Unit Manager has promoted a compassion-focused strategy for her staff [E3].

The significance to educationalists of Pettit’s work on promoting compassion has also been recognised by leading figures in the field, in the UK (Associate Professor, Learning & Teaching, University of Hertfordshire) and in the USA (Professor of Postsecondary Educational Leadership, Faculty of Administration, Rehabilitation, & Postsecondary Education, San Diego University) who have promoted the work through an International Compassion network of over 60 universities worldwide [E8] leading to collaboration in curriculum developments and delivery.

Wilson’s research findings [R4-R6] underpinned the delivery of the Proactive Management of Integrated Services and Environments (PROMISE) programme at the CPFT which resulted in improved compassionate mental health management of patients with mental health problems or learning disability, an impact referred to by the CQC as “huge” [E4; p15]. In 2018, data presented from 4,500 patients [E9] identified that physical intervention across the entire Cambridge & Peterborough NHSTrust was reduced by 35%, and reduced further in specialist mental health care units. The 48 interventions in the Learning Disability Unit for 2015/16 reduced by 81% to 9 in 2016/17 Similarly, in the Psychiatric Intensive Care Unit (PICU) another 81% reduction took the numbers from 44 to 8 over the same time period.

Reductions for prone restraints were proportionately greater [E9]. In the Learning Disability Unit, 16 prone restraints in 2015/16 decreased to zero in 2016/17, while in the PICU, the change was from 13 in 2015/16 to 2 in 2016/17. In 2016 and 2017, the Specialist Personality Unit and Low Secure Unit of the Cambridge & Peterborough NHS Trust were prone restraint-free for 23 and 20 (of 24) months, respectively. The initiative was central to the Trust changing its practice of physical interventions with in-patients who have mental health disorder or learning disability, from a baseline (2014-2015) of 328 incidents of prone/physical restraint to 124 in 2016-2017, so reducing risk to patient wellbeing [R6].

Patient satisfaction measured at 85-88% between 2014 and 2017 with related respect and dignity arising mainly from changes in physical restraint identified by 96% of patients. The change has been sustained [E9]. In 2015, PROMISE won the Strengthening the Foundation award from the Patient Experience Network [E10].

Summary

Gautam’s purposeful engagement on DFSA with stakeholders at all levels of Nepali society has led to wide-reaching impacts. Key beneficiaries of the research include Nepal’s two main forensic science laboratories, who have acquired the capacity to investigate DFSA more effectively (demonstrating impacts on practitioners and delivery of professional services); students and teachers at schools, where the national curriculum has been reformed and specialist nurses have been provided to advise on sex education and reproductive health; government ministers and other senior policymakers; community leaders; police officers; legal professionals; medical and public health practitioners; and the general public.

Influencing professional standards and training: Enhanced forensic services in Nepal

In 2018, Gautam delivered training based on her research at Nepal’s two main state-owned forensic science laboratories, the Central Police Forensic Laboratory and the National Forensic Science Laboratory, both located in Bagmati Province [5.1–5.2]. Through this training, 48% (N=25) of chemistry and toxicology scientists at both labs acquired the ability, for the first time, to analyse beverages suspected of involvement in DFSA cases and quantify drugs from beverages and hair samples. As feedback received from the Nepal Police Forensic Lab states: “This training has certainly enhanced the competency of our staff in the area of qualitative and quantitative analysis of drugs and toxicological samples, which has been a big challenge for us since long [sic] ’’ [5.2]. One trainee commented: “Now I can better analyse the sample and generate results, both qualitatively and quantitatively. I can help in result accountability of my organisation’’ [5.3a]. During the training, laboratory protocols were developed building on Gautam’s underpinning research [3.1 and 3.3], which enabled the forensic science laboratories to detect and quantify drugs more effectively from different sample matrices (blood, drinks, hair and street drugs) [5.1]. Those trained also acquired the ability to “train new staff, adopt standard operating procedures and contribute in upgrading the lab facilities’’ [5.3b] in six other provinces (sub-national level) [5.4]. In particular, the capacity-building training resulted in changes in the storage and processing of samples received and updating of standard operating procedures and training manuals [5.4].

Impact on health and wellbeing through policy change and outreach in schools

Gautam’s research and resulting engagement with the Head of the National Examinations Board in Kathmandu, resulted in the introduction of the **“one school one nurse” policy in Bagmati Province in 2018 [5.5]. By the end of December 2020, this new policy had been successfully implemented at 19 state-run schools, with plans for it to be rolled out to a total of 119 schools in the province. The nurses provide counselling on sex education and reproductive health to female students.

In 2018/19, Gautam carried out school and college-level outreach activities on DFSA, with support from Nepal’s National Examination Board [5.5], civil society organisations and professional bodies. By June 2020, these had reached 13 schools (990 students) and 11 college/university-level institutions (1,102 students) as well as more than 163 teachers/academics. These activities influenced attitudes, awareness and understanding of DFSA among schoolteachers and students, as student feedback demonstrates: “The teachers themselves feel awkward while talking about the subject matter. In my personal experience as well, I was not able to understand much about sex education during my school days’’ [5.6a]. Another participant said: “There is not enough coverage, people should not have guilt, and shame to say if they have been sexually assaulted” [5.6b]. Feedback from a workshop with students and teachers in 2018 highlighted the need for effective implementation of “sex and relationship education” as well as drug-related issues in schools and colleges, with ideas such as offering extra-curricular education on sex and relationships and on drugs receiving a positive response from teachers. Consequently, in 2020, the revised curriculum included topics on sex education and drugs [5.5]. Some schools have addressed this issue by hiring female staff and though performing drama, essay competitions and invited speakers [5.7].

Gautam’s initiatives also led to ‘‘hospital staffs considering these new dimensions and issues in the assessment of the cases handled”, according to the Ministry of Health [5.8]. Following one of Gautam’s events, one student victim came forward and reported that she had been sexually assaulted; as a result, she received the necessary support and was referred to a specialist NGO.

Influencing public policy on DFSA: Raising awareness among policymakers and professionals and changing legal practice

Gautam’s research and subsequent engagement with the then Joint Secretary of the Office of the Prime Minister of Nepal in 2018 led to three national-level workshops with active participation from a variety of relevant stakeholders. 39 non-governmental and 25 governmental organisations (1,471 people including teachers) took part, including representatives from different government departments, school education and curriculum officials, students, police officers, forensic scientists, lawyers, medical professionals, public health experts, human rights activists and media. The Joint Secretary described the sessions as “particularly valuable” [5.9]. As the workshops were also attended by top-level officials (e.g. Nepal’s Minister of Education in 2019), they provided opportunities for advocacy efforts on incorporating DFSA issues in education policies and the school curriculum [5.5 and 5.9].

The workshops highlighted how much of a social taboo still surrounds DFSA in Nepal. Feedback received after the first workshop from a district court judge stated that “... the cases that come to court are only symbolic; there are still many cases that are unreported or made compromise by police” [5.6c]. To address this, in the third workshop (2019) Gautam introduced the use of alternative tools (such as drama, poems and mind-mapping) to communicate and facilitate learning on this sensitive topic. These ideas have already been applied in schools [5.7].

Feedback also indicates that the workshops led to changes in legal practice: a district judge from Pokhara reported enhanced understanding of sample types and the memory loss associated with DFSA, which often leads to victims reporting the crime late. The judge commented: “I and my legal cohort have considered these new dimensions and issues in the assessment of the cases handled since then… the information disseminated from the DFSA workshop were helpful in making decision which comprised 40% out of 800 criminal cases settled in my bench.” [5.6e]

As a direct response to Gautam’s work, Nepal’s Minister of Education, Science and Technology (who was the chief guest in one workshop) stated that there was a need to put correct policy measures and effective teaching methods in place [5.10a]. The Minister also highlighted the need for proper scientific investigation of sexual assaults and the rising number of DFSA cases. To that end, he invited Gautam for a follow-up meeting in the Ministry in which she shared her research findings and assessment of media coverage on DFSA cases with the minister, providing a list of recommendations based on her research and feedback from the workshop.

Increasing public awareness of DFSA and changing attitudes

The workshops also led to wider media coverage [5.10a-i] of DFSA. In 2018/19, Gautam actively promoted her message through invited TV interviews and panel discussions in the local language [5.10e, h, i], an interview with BBC Nepali Radio [5.10g], and an article co-authored with a local medical doctor and published in a medical professionals’ outlet in Nepal [5.10k]. Previously, in 2014, she had written an article on DFSA in a Nepalese newspaper [5.10j]. Several of the interviews and articles were viewed, shared and liked on YouTube and Facebook, totalling 19,838 engagements. Collectively, these media engagements reached an online audience (followers) of more than 5 million people, equalling 19% of Nepal’s total population. Audience feedback demonstrated active discussion of the subject, as this sample response on a TV programme highlights: “… It was a wonderful discussion, informative, scientific and valuable in our society. Congratulations for disseminating this knowledge in Nepalese scientists and public” [5.10l].

Gautam also shared her research findings at community level, e.g. at an event in 2019 organised by a community development police–public partnership project in Baneshwore, Kathmandu.100 participants (including a number of mother groups and local parents) attended this event, representing six different grassroots organisations. Similarly, Gautam was invited to take up the role of advisor in a 3-day programme organised by BSN, a youth group in Nepal on the “Impact of Science in the Federal Democratic Republic of Nepal”, 23–25 April 2019, with forensic science and Drug Facilitated Sexual Assault topics introduced for the first time. Gautam contributed to this event attended by more than 1,000 participants through an exhibition (posters, pamphlets, one-to-one conversation) and an oral presentation on DFSA. In June 2020, during the Covid-19 lockdown, Gautam was invited to a Zoom webinar organised by Janata Multiple Campus and Ladies Jaycees, Itahari (Province 1). The event was attended by 77 participants and broadcast live on Facebook, resulting in 3,300 views and 14 shares. Participants found the presentation “really relevant, situational, informative and dynamic’’ [5.6d]. These events have allowed Gautam to reach a wider public, addressing the need to make more people aware of DFSA.

Most recently, Gautam has begun to transfer the insights from her work in Nepal to other countries. In Botswana she is co-supervising an MSc research student as an impact of her webinar. Public events have been offered in the UK, e.g. at the Cambridge Science Festival 2020. Gautam delivered an invited webinar on DFSA to an audience in India (hosted by Amity University, India).

The impact of the research findings has been global in reach and has shaped the strategies and practices of international organisations, as well as practices at country level and of large charities. The WHO, UN and the governments of Australia, Sierra Leone, Nigeria and the UK have made eye-health policies and/or investment decisions based on the research findings. Charities in the UK, US and Australia, working in over 25 countries, have used the data to underpin their lobbying activities and to inform their strategies and investment decisions.

Professor Bourne disseminated key findings from his research through meetings, keynote invited speeches and research collaborations with various government and non-government agencies, charities and other international policymakers. This approach was taken specifically to inform policy and decision making such as the development of pathways for improved eyecare informed by the research findings.

The impacts can be summarised under three headings:

Influencing eye-health policy at the global level

1. VLEG data was used to create the ‘Vision Atlas’ in 2016, an open-access, online tool developed by Professor Bourne with the International Agency for the Prevention of Blindness (IAPB), which is the principal global lobby group for eye health. The Vision Atlas reports 243,000 unique visitors and 314,000 page views since 2016 (30/12/2020). IAPB has representatives of governments and NGOs on its boards, and the consolidated information on global eye diseases held in the Atlas has underpinned its efforts to influence policymakers. The CEO of IAPB stated: “ The VLEG data have been critical to IAPB and our members to define advocacy strategies and plans, and to achieve advocacy successes at the global level. These have included gaining a commitment to ‘eye health for all’ in the Commonwealth Heads of Government Meeting communique, getting governments engaged in shaping the work of the UN Friends in Vision, and gaining attention to eye health within the Global Strategy for Human Resources for Health” [E1].

2. Aside from the Vision Atlas, the IAPB have used VLEG data [R2] to develop advice and strategies on managing and eradicating reversible causes of global vision impairment such as myopia and cataract. This includes IAPB’s and WHO’s strategy to quantify the need for cataract operations worldwide and per country (2017), mapping this need onto actual operations carried out in identified countries where there is an unmet need [E2].

3. In collaboration with the World Health Organization, the IAPB used the VLEG data to gauge how effectively the WHO’s Global Action Plan (2014–19) for Universal Eye Health has met its target. The WHO stated: “The results of the VLEG provided much of the evidence base for … ‘Global magnitude: eye conditions and vision impairment’ of the first WHO World report on vision that was launched globally ... in 2019.” It continued: “The data were also extensively cited in the ‘Report by the Director-General’ [of the WHO] and the proposed resolution on ‘integrated people centred eye care’ that was subsequently approved by the WHO Executive Board in February 2020”. [E3]

4. The Fred Hollows Foundation (a non-profit aid organisation for the prevention of blindness and other vision problems, operating across 25 countries) is a stakeholder in setting global eye-health policy at the UN. Their Director of Global Partnerships stated that they had “ utilised VLEG data in advocating for the inclusion of eye health… within the global policy at the United Nations, such as [the] UN Third High Level Meeting on Non-Communicable Diseases (2017) and during negotiations for the UN First High Level Meeting on Universal Health Coverage”. They added: *“This is a testament to the utmost importance of credible and consistent evidence in shaping political agendas and sound policy responses.*” [E4]

5. The Pan American Health Organization in collaboration with WHO used the VLEG data at their meeting of the 72nd session of the Regional Committee of WHO for the Americas (September 2020) to generate the plan for ‘Action for the prevention of blindness and visual impairment’ that offers concrete actions to address priorities for the prevention of blindness and improved eye care for different countries of America [E5].

Shaping strategies and practice at country level

1. VLEG data have been used to plan large population-based studies. The Australian government recognised the need to update its population-based data and then committed to funding a second countrywide survey. The Chief Investigator said “ the VLEG data… meant that we had the estimates of vision loss we needed to help plan a sample size for the Australian National Eye Health Survey (NEHS)… The study has had very significant impact in Australia, with the follow-up survey to commence in 2020, and this has gained the support of the Australian Government” [E6]. The implementation of this has been delayed due to COVID-19.

2. VLEG research identified a need to have up-to-date comprehensive data of eye health in the UK, leading to the development of the protocol for the UK National Eye and Hearing Survey (UKNEHS; Prof Bourne is Chief Investigator). The Survey will examine 25,000 participants drawn from across the UK. The programme has been finalised and was costed and importance noted by the Four Nations Committee for Public Health committee at its January 2020 meeting [E7]. The protocol has received support of multiple public sector stakeholders in the UK, evidenced by events held at the House of Lords (February 2019) chaired by Lord Low and Professor Sir Michael Rawlins, at the Conservative Party Conference (October 2019) and the Houses of Parliament (October 2019).

Shaping the strategies and practice of charities and NGOs

1. Vision Aid Overseas (VAO), a UK charity operating in Africa, has used VLEG data to advocate the need for universal eye care. At an event at the House of Commons (2018) designed to mobilise political will towards improved access to affordable eye care in developing countries, Bourne was an invited keynote speaker. The CEO of Vision Aid Overseas stated: “Since [..] the House of Commons, VAO has been developing its [..] School Based Eye Health and Primary Eye Care” and “ When producing programme proposals and presentations to donors and partners (including for UNICEF in Sierra Leone and Ethiopia and in our successful applications to USAID), IAPB, VLEG and the Atlas have been the go-to organisations for such data and analysis” [E8].

2. VLEG data and the Vision Atlas have been used by other major charities to further their agenda for improving eye health globally. For instance, the CEO of Sightsavers, referring to the VLEG research stated: “ For the first time, the eye health community has a clear and objective evidence” and confirmed that the data had informed government policies in : (i) “ in Sierra Leone, the Vision Atlas was the prime source of data in the development of the National Health policy in 2018”’ (ii) “ In Nigeria, the Vision Atlas was used to convince the Minister of Health… and the first National Eye health policy was approved by government in 2019”. Further, VLEG data has informed Sightsavers’ own organisational policies for improvements, especially with regards to gender inequality in eye care. The CEO stated: “Sightsavers has ensured that all our data is now gender disaggregated...to make sure more women are reached with eye health services than men”’ [E9].

3. The SEVA Foundation (an international NGO working in more than 20 countries), referred to VLEG’s data [R3], when they stated in their strategy document (2018) that there were “clear and specific actions needed to redress this unmet need for cataract operations”. As a result, it has planned “to add another million sight-saving surgeries in developing countries per year”, through its Global Sight Initiative (GSI) [E10].

Summary: The research primarily benefited the following groups/organisations: Medicines and Healthcare products Regulatory Agency (MHRA); the NHS and healthcare professionals; patients using emollient products; Fire and Rescue Service professionals; and fire fatality investigators. Specifically, impact was on licensing and regulatory decisions by the MHRA; awareness of healthcare professionals, leading to improved safety advice to the public; awareness within Fire and Rescue Services; improvements fire investigation processes and advice in fatalities linked with emollients.

Impact on licensing and regulatory decisions by the MHRA

Hall and Morrissey and FRSs partners advised the MHRA on the risks demonstrated by the research and the need for regulatory action. In response, the MHRA issued a drug safety update in December 2018 ( evidence 5.1 and 5.3), highlighting the risks presented by low-paraffin and paraffin-free products and dried-on residues on clothing. In this document, the MHRA advised healthcare professionals to warn patients using emollients not to smoke, not to go near naked flames and to be aware of the risk of easy ignition.

As a result of this update, ScriptSwitch (the prescribing software used widely by the NHS) was updated by 17 NHS CCGs (as of May 2019) to include a flammability warning on all skincare products ( evidence 5.2).

The MHRA also used the research for regulatory and licence updates for manufacturers. These include flammability warnings on products ( evidence 5.3). By the end of December 2020, 159 licenses had been updated, with 19 pending. The MHRA used the research for updates in the British National Formulary (BNF), in December 2018 ( evidence 5.4), warning against the risk of severe burns with paraffin-based and paraffin-free emollients. In July 2020, the MHRA used research findings in its new communication strategy for professional bodies.

Impact on healthcare professionals

Hall and Morrissey are members of a regional stakeholder group with Cambridgeshire and Peterborough CCG and Cambridgeshire FRSs. A partnership campaign on safer use of emollients, was launched in October 2019. The campaign material was sent to local pharmacies (160), dispensing practices (50), GP practices (100), acute trusts (10), hospices (4) and care homes (180). This included 20,000 public information leaflets for NHS ‘stay well’ packs; 18,000 patient/public information leaflets ( evidence 5.5); 840 posters; 5,000 carers leaflets; and 15,000 pharmacy bags. Feedback demonstrates the effectiveness of the campaign ( evidence 5.5); one pharmacist commented: “ The bags were an excellent prompt. Nearly all patients asked why they had a special bag, which facilitated the conversation”. Another practitioner commented: “ It allowed us to effectively target those patients for whom this campaign was intended”.

Hall and Morrissey gave three presentations to West Essex CCG in 2018/19. Members of the audience (approx. 120 from within the NHS) have changed their advice to emollient users on the basis of these presentations ( evidence 5.5).

Hall and Morrissey gave two talks (2018) to NHS Home Oxygen Services (HOS) and patient safety groups on the fire risk posed by emollients, receiving strong pledges to communicate updated emollient advice ( evidence 5.6). As a result, the HOS changed its advice to practitioners and patients, warning against touching oxygen systems with hands contaminated with creams, and the risks of wearing of clothes impregnated with dried residues of emollients ( evidence 5.6).

Impact on Fire and Rescue Services

In 2019, the National Fire Chiefs’ Council (NFCC), the professional voice and a major resource of all 53 of the UK’s FRSs, was represented at a presentation of the research at the UK Association of Fire Investigators conference in Leeds. The NFCC released a statement on the importance of being aware of the hazards posed by paraffin-free emollients. The NFCC Emollients Lead, said: “ We are asking people who prescribe, dispense or apply these products to be aware that switching to a lower or paraffin-free emollient will not reduce the fire risk. Washing fabrics will reduce the risk but may not totally remove it” ( evidence 5.7).

Impact on forensic investigations

As well as the research results being incorporated into training packages in the FRSs ( evidence 5.7), the research has benefitted forensic investigators. In Spring 2020, Prometheus Forensic Services, an independent fire investigation company and training provider, asked police forces that have fire-related work to note the use of emollients in any of the cases ( evidence 5.8). A fire investigator working with North Wales Fire and Rescue Service approached Hall for advice in February 2020, which led to the researchers analysing fabrics from a victim to identify any traces of emollients. The information provided by Hall was used in the investigator’s report to the coroner ( evidence 5.9).

Awards

The collaboration with West Yorkshire and Essex FRSs and the London Fire Brigade won the Collaboration of the Year award at the Excellence in Fire and Emergency Awards in December 2019 ( evidence 5.10).

The research impacted two main groups: patients with diabetes, and healthcare professionals in UK, Nepal, China, India, and Thailand. The key findings from Pardhan’s research led to extensive and ongoing engagement with various stakeholders, including clinicians, hospitals, community leaders, and professional bodies within the UK and in Nepal, India, Thailand and China. This in turn led to the development of culturally, geographically and linguistically appropriate strategies to improve health literacy and retinal screening uptake and to promote healthier lifestyles. At least 110,417 individuals with diabetes directly benefited from the research, acquiring a better understanding of diabetes and how to reduce the risk of diabetic retinopathy.

Behaviour change through improved awareness of diabetic retinopathy screening in patients

In the UK, Pardhan and her team, based on the findings of the UK research [R1–3] disseminated key information on diet, lifestyle and the importance of retinal screening via interviews on radio and television including ITV News Anglia, British Forces Broadcasting Service, Gurkha Radio (May 2018), Salaam Radio (a Muslim community station), and Online Services (OS) Nepal [E1 (i-iii)]. These, in turn, led to invitations by South Asian community groups and clinicians and the co-production of three short diabetic awareness programmes appropriate for the UK in Nepali, Hindi and Urdu languages, addressing the need for culturally and linguistically appropriate training programmes. The programmes, delivered in the form of video clips in the three languages covering the four themes of good diabetes control, dietary advice on Asian food, physical activity and the importance of retinal screening [R1–3] – all directly addressing the lack of knowledge around diet and exercise and language barriers that was identified by the research. The videos were disseminated jointly by the ARU Diabetic Retinopathy Awareness and Prevention Programme (ARUDRAPP) led by Pardhan, and community teams at the grassroots level at community centres, mosques, religious festivals and community gatherings across the country, including Aldershot, Peterborough, Hays and Harlington, Birmingham, Bexley and Welling, Cambridge, and Luton (2018–2020). Altogether the programme reached 11 South Asian communities across the UK with a joint membership of over 15,150. Following one event, the chairman of the Pakistan Community Association of Peterborough stated that 90% of attendees found the workshop very useful. Participants commented: “We will share this knowledge and awareness about diabetes and importance of attending retinal screening to our family members and friends who have diabetes” [E2 (i)]. Participants attending workshops organised by the Non-Resident Nepali Association stated: “We were ignoring letters by doctors…. but we will not ignore them now - we have now had our eyes photographed and we will continue to do so on a regular basis” [E2 (ii)]. This work has the potential for a large nation-wide study to examine how the behaviour change leads to improved patient outcomes.

In Nepal, [informed by R4] the Diabetes and Endocrinology Association of Nepal (DEAN) invited Pardhan and her team to a brainstorming meeting with 25 people in 2018 to develop training for diabetic patients. Participants included representatives of DEAN and the Nepal Health Research Council, diabetic patients, and healthcare providers including a diabetes doctor, a dietician, an ophthalmologist, a physical activity instructor, and a behaviour change worker. Diabetes-awareness training, culturally appropriate to the Nepali context, was developed in the local language, to address the barriers identified by the research. DEAN stated: “ This (research) has led to improved strategies *[and]*… an intervention to improve diabetic control” [E3]. The Nepalese Association of Optometrists has been rolling out the training programme via outreach activities to 50 villages in all 7 provinces of Nepal [E4]. Since 2018, the Diabetes, Thyroid and Endocrine Care Centre, one of the two major diabetic centres in Pokhara, Nepal’s second largest city, has used the training programme to improve awareness for all their diabetic patients attending clinics [E5]. By the end of 2020, the training had benefited 28,356 patients, of whom 89% requested retinal screening compared to 28% prior to the training. A randomised clinical trial (ISRCTN10990062) has also been set up in collaboration with Pardhan’s team. Preliminary data shows that 98% of patients in the intervention group requested a diabetic retinal check within three months, compared to 36% in the control group [E5].

In India (Darjeeling), the training programme, developed in Hindi and Nepali, has also been delivered to all patients with diabetes attending Kurseong subdivisional hospital, a tertiary care hospital, since 2018. The uptake of retinal screening was historically as low as 20%. Between January 2018 and May 2020, the training was delivered to 26,556 patients, 88% (n=23,369) of whom then requested retinal screening [E6]. The programme has demonstrably improved knowledge and awareness of diabetic treatment and uptake of retinal screening. Patients reported: “ We thought our own herbal medicines are enough - now we know that we need to take the medicine given by our doctors.” “We will go and have a diabetic eye check today - we don’t want to go blind by delaying it.’’ [E6].

Changes in patient care by healthcare professionals

In Nepal, following ARU’s input into an evidence-based approach [R3, 4], doctors at the Himalaya Eye Hospital in Pokhara initiated improved patient care for those needing surgery. The hospital is the largest tertiary eye hospital in the western region of Nepal, providing comprehensive eye care services to a population of 3 million people, with a catchment area covering 25% of the total land area of Nepal. Doctors at the hospital now actively follow up on patients with diabetes. The hospital states that “Pardhan’s research …. has highlighted the need for more support” and this has “led us to target those patients who are more at risk of blindness”. It points out that this has “already improved health of a majority (87%, n=9755) of our patients who are most at risk of going blind” [E7].

In India, the research collaboration between the ARU team and Sankara Nethralaya Hospital in Chennai (2016–2020 [R3, 5]), led to innovative approaches to improving patient attendance. The hospital, rated among the top four ophthalmic institutions worldwide (2020, Newsweek) and treating 17,000 patients annually with sight-threatening retinopathy, states: “ [The] research has directly led to a system by which we now send text messages to all our patients to attend the clinics. We have developed a bespoke one-to-one counselling service for patients with sight-threatening retinopathy to explain the importance of regular attendance and treatment” and “ this has already improved attendance…and reduced risk of blindness in 90% (n=30,600) of all the patients with sight-threatening retinopathy” [E8].

In China, ARU’s research collaboration [R6] with healthcare professionals at the Second Affiliated Hospital of Zhejiang University, which is the second largest hospital in Hangzhou (serving 600,000 outpatients in the country’s eastern region) led to strategies to address the high level of diabetic blindness in patients attending the eye clinics. Pardhan gave a series of invited talks in October 2016, and also organized a three-day seminar at Southern University of Science and Technology in Shenzhen that brought together 41 researchers from the UK and China, funded by British Council’s Newton fund (2016-RLWK7-10178), to brainstorm community-based solutions for vision and hearing problems (December 2017). These led to the co-development of leaflets in Chinese for the hospital. The hospital states “[These] leaflets are the first to be written in Chinese and distributed to every patient attending the diabetic clinic. We have also developed a programme of retinal screening at the point of diagnosis… and we also send regular reminders to our diabetic patients. This has already reduced the risk of diabetic blindness in our patients” [E9]. A further update on data has not been possible because of COVID-19.

In Thailand, the ARU research on barriers to retinal screening [R3, 4] informed Rajavithi Hospital in Bangkok (2018) to address the low uptake of retinal screening (38%) delivered by Thailand’s national retinal screening programme. Meetings with Pardhan led to the development of various strategies to address this situation, which were approved by the Ministry of Health. The Chief of the Department of Medical Policy Development and Strategic Planning at the hospital states: “The Ministry [of Health] has commissioned a national programme in five regional centres, that is informed by Professor Pardhan’s research to improve compliance of retinal screening and also treatment”. As a result, eyecare staff from five screening centres in Thailand attended diabetic retinopathy courses in India to upgrade their skills in order to address the barriers that have led to the low levels of retinal screening among patients in Thailand [E10]. Further data collection has not been possible due to COVID-19.