Impact case study database

Research at UH has developed new patient-centred strategies for the management of advanced CKD. It has changed clinical guidelines and practice, resulting in the greater availability of conservative management as an alternative to dialysis should patients choose it, and wider clinical uptake of alternative dialysis modalities including incremental haemodialysis and haemodiafiltration over standard haemodialysis. It has increased patients’ involvement in the management of their own care, delivering improvements in patient experience.

Changing clinical practice to increase patient choice

CHSCR research has significantly increased the uptake of conservative management as an alternative to dialysis for older, frailer patients. This is evidenced by citations in new national and international clinical guidelines published during the impact period and peer-reviewed studies describing changes in clinical practice. Research in 3.1 and 3.2 informed a key recommendation in the UK Renal Association’s practice guideline Planning, Initiating and Withdrawal of Renal Replacement Therapy (2014): ‘ We recommend that patients with advanced kidney disease (CKD Stage 4 & 5) who opt not to dialyse should undergo conservative kidney management [ 5.1].’ Kidney Disease: Improving Global Outcomes (KDIGO) is a charity that develops and implements evidence-based clinical practice guidelines. In 2015, it published Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care; Farrington was a member of the KDIGO consensus group. It cited 3.1 as evidence that ‘ the survival advantage of dialysis disappears in patients ≥75 years of age with high levels of comorbidity and/or poor functional status’. It recommended: ‘ For patients unlikely to benefit, positive alternatives to dialysis, in the form of comprehensive conservative care, should be provided [ 5.2].’

Based on his research in 3.1- 3.3, Farrington was asked by NHS Improving Quality to co-author (with one other author) End of Life Care in Advanced Kidney Disease: A Framework for Implementation (2015). The Framework focused on patients opting for conservative kidney management and those deteriorating despite dialysis. Its overarching aim is to enable people to make informed choices about their care needs and achieve high quality end of life care. A key section of the Framework reads: ‘ It should be emphasised that a ‘no dialysis’ option is not a ‘no treatment’ option: conservative management can relieve many symptoms, and maximise the person’s health during the remainder of their life [ 5.3].’ A year later, in 2016, the official guideline body European Renal Best Practice published its Clinical Practice Guideline on management of older patients with chronic kidney disease stage 3b or higher; Farrington was committee co-chair. Citing four papers authored by UH researchers, including 3.1 and 3.2, it stated that conservative management is a viable treatment option for some patient groups, which may not adversely affect survival or quality of life. It read: ‘ Choosing CM (conservative management) over dialysis might avoid unwanted outcomes such as hospital admissions and improve outcomes such as access to palliative care and receiving care in a preferred place [ 5.4].’ It concluded: ‘ We recommend that the option for CM be discussed during the shared decision-making process on different management options for ESKD (end-stage kidney disease) [ 5.4].’

In October 2018, NICE published its guideline NG107: Renal replacement therapy and conservative management. Its aim was to improve quality of life by making recommendations on planning, starting and switching treatments, and coordinating care. The supporting evidence reviews cited five UH-authored papers [including 3.1 and 3.3] relating to offering certain patients the choice of conservative management [ 5.5]. One of the guideline’s key recommendations read: ‘ Offer a choice of Renal Replacement Therapy or CM to people who are likely to need RRT [ 5.5].’ It also recommended an RCT of CM versus RRT in older people with a poor prognosis, which led directly to the PrepareME trial [ G1] [ 5.5].

Taken as a whole, CHSCR research and the resulting new guidelines have increased the penetration of conservative management as a viable treatment for older frailer patients. This is evidenced by peer-reviewed papers, published during the impact period, demonstrating frequent use and wide acceptance of the role of conservative management in the UK [ 5.6a; cites 3.1- 3.3], the Netherlands [ 5.6b; cites Farrington research], Canada and Australia [ 5.6c; cites 3.1- 3.3].

Individualising haemodialysis treatment for better patient outcomes

The benefits of residual kidney function in HD patients [ 3.4] were highlighted in the Renal Association Clinical Practice Guideline on Haemodialysis (2019); Farrington and Vilar sat on the guideline committee. The guideline is for doctors and nurses in dialysis units and related areas in the UK. In line with UH research, it highlighted the advantages of incremental haemodialysis. It read: ‘ The practice of incremental HD is consistent with a concept of progressively increasing therapy (as residual renal function declines) over time, which may include augmented schedules at a later stage [ 5.7].’ Citing 3.4, it read: ‘ Preservation of residual function is of clinical importance since it provides significant solute and fluid removal, and is associated with improved quality of life and survival.’ And citing 3.7, it read: ‘ … patients with complex comorbidities can improve with more frequent therapy, more tailored to their needs [ 5.7].’ It also cited UH research to recommend that treatment should be adapted for ‘ women and smaller patients’ [ 5.7].

In line with UH research, NICE NG107 guidance [ 5.5] cited evidence suggesting that in-centre HDF was more effective than in-centre HD It recommended that dialysis units should ‘… consider HDF rather than HD for in-centre dialysis.’ Note was taken by the guideline committee of the on-going RCT of high-volume HDF versus high-flux HD [ G2].

Implementing new methods and measures to improve patient experience

Having demonstrated the value of a designated facilitator for self-management of CKD, the SELFMADE study [ G3] led to the creation of the new role of part-time peer support worker at East & North Hertfordshire NHS Trust. This study, combined with the research on depression that demonstrated the need for more effective self-management approaches [ 3.7], led to the appointment of Farrington as a programme board member for the joint UK Renal Registry/NHS England project Transforming Participation in CKD (TP-CKD). He co-chaired the Interventions group, which published the Think Kidneys ‘Tools for Change’ in September 2016. This practical toolkit enables patients and health professionals to work together to improve the knowledge, skills and confidence of patients with kidney disease (stage 3b or higher) [ 5.8].

The key output from this body of work was the development of the Patient Reported Experience Measure for Kidney Care (Kidney PREM), first published by the Renal Association and Kidney Care UK in 2016 [ 5.9]. Through TP-CKD, Farrington played a key role in the initial development of the PREM and the wider CHSCR team led the validation and analysis of the instrument [ 5.9, 5.10]. Its publication led the chair of NHS England’s renal services clinical reference group to call it ‘ a watershed moment with the formal recognition of patient experience as a quality marker in renal care’ [ 5.9]. CHSCR leads the data analysis and production of the annual kidney PREM report. In 2019, 70 adult renal centres across the UK participated in the survey, with 16,469 patients from 297 units providing responses (up from 8,162 in 2016) [ 5.9]. According to the Renal Association and Kidney Care, Kidney PREM is seen as ‘ an official tool to reduce the variation in how kidney services are delivered across the NHS and promote the sharing of best practice to improve patient care’ [ 5.9]. The data is used by local renal teams and patient groups to improve patient care across the country [ 5.9] and has been ‘adopted as a key element of service review’ by NHS England’s improvement initiative Getting It Right First Time [ 5.9]. The Chief Executive of the Renal Association confirmed that research at UH had allowed the refinement and validation of the instrument [ 5.10]. He wrote: ‘ The tool is now used to provide insight into patient experience across the UK on annual basis with results used by national programmes to assess hospital performance [ 5.10].’

Impact on health and care services: the Enhanced Health in Care Homes programme

The care home research described above has directly influenced the way care homes and the NHS work together. In 2014, as part of its plan to implement the Five Year Forward View, NHS England set up a series of “vanguards” to pioneer new systems of joined up care. One of the areas chosen was Enhanced Health in Care Homes (EHCH) which aimed to offer older people better, joined up health, care and rehabilitation services. Goodman briefed the Department of Health leads (David Foster and Jean Christensen) on the nursing workforce in care homes and spoke at the NHS England Vanguard summit. The findings from the Optimal study were critical in determining how these sites operated. The National Care Homes Lead at NHS England wrote in 2017 that “ The emerging evidence from Optimal both supported and shaped the work NHS England has done to develop a model of care for Enhanced Health in Care Homes” and that “ the Optimal study has both shaped and supported transformation of care at a large scale across England” [ 5.1]. Implementation of the EHCH framework has now become national policy for the NHS in England, applicable to over 11,300 care homes and 410,000 care home residents.

The former National Clinical Director for Older People and Person Centred Integrated Care at NHS England, who was responsible for taking forward the findings from the care homes Vanguards initiative into national NHS policy and developing the EHCH programme in England, has said: “ The evidence from your care home research not only fed directly into our utilisation of outputs from the care homes Vanguards but also the subsequent development of national care homes policy and the approach to national implementation of the NHS EHCH service offer. The findings and recommendations from the Optimal study about the need for the NHS to provide wraparound care for care homes are reflected in the EHCH framework. It has been a hugely rewarding experience to directly utilise evidence from your and others’ programme of care home research to help directly address some of the current and most pressing challenges facing social care. It has provided much needed and robust evidence for policy reform that aims to redress inequalities of access to health care experienced by care home residents” [ 5.2].

The findings from Optimal and other studies were also disseminated widely to care home professionals and healthcare decision-makers through a policy briefing paper and accompanying YouTube video which the research team created in 2017. Findings from the Optimal Study and a link to the video were disseminated to 18,000 care homes by the My Home Life Charity. The bulletin, which was badged “for the staff room” said in its introduction “ Great news! A new piece of research - The Optimal Study - shows how the NHS and care homes can work better together to improve the lives of those who live in them… the study provides helpful evidence of how the NHS needs to work in better partnership with care homes” [ 5.3]. Notably, the briefing received over 200 referrals linked from the My Home Life website, showing that the target audience valued the information and wanted to learn more. The video has been viewed over 1,000 times to date [ 5.4].

Impact on policy making and professional practice: dementia and co-morbidities

In 2016, Bunn was invited by the Alzheimer’s Society to be an expert witness to the All-Party Parliamentary Group (APPG) on Dementia’s inquiry into care for people living with both dementia and other chronic conditions. She gave oral evidence (based on the findings from CoDem and DIAMOND) to the inquiry. For example, she outlined how people with dementia and diabetes may find it difficult to manage their medication and must rely on help from family carers. This point was picked up in the APPG report published later that year titled: Dementia Rarely Travels Alone: living with dementia and other conditions [ 5.5] .

The same year, the CoDem team created an animated infographic video to disseminate the findings of the study to healthcare professionals and service users. This was conceived in direct response to feedback from busy specialists who did not have enough time to read and digest academic papers. The film was uploaded onto the University’s YouTube channel and sent directly to key stakeholders including clinicians, policy makers, voluntary groups, organisations involved in the care of people with dementia, academics and members of the public. An evaluation of impact the following year found that the film had disseminated the study’s findings well, and that people found this an effective alternative to academic publications. Many recipients reported that they had passed it onto other colleagues. Highlights included: the film was included in the training of GPs by the Wessex Academic Health Science Network and was used in training of over 300 people (doctors, nurses and other surgery staff); the Alzheimer’s Society put the film on their staff pages; Vision 2020 UK disseminated the film in their newsletter sent to about 45 member organisations including: RNIB, Association of Optometrists, Association of Health Professionals in Ophthalmology, Action for Blind People; the RNIB produced and distributed an accessible version of the film for visually impaired people [ 5.6].

Impact on health and social care guidance

NICE Guidance 97 “Dementia: assessment, management and support for people living with dementia and their carers,” (published June 2018) for the first time included recommendations about dementia and comorbidity, citing the CoDem study and rating this evidence as “very valuable” [ 5.7]. Research on interprofessional working was used in NICE Guidance 22 on “Older people with social care needs and multiple long-term conditions” (published November 2015) [ 5.7]. Work on end of life care was cited in NICE Guidance 86 on “People's experience in adult social care services: improving the experience of care and support for people using adult social care services” (published June 2018) [ 5.7]. A briefing issued by SCIE on “End of life care for people with dementia living in care homes” (published in 2012 and valid throughout the current REF period) cited six papers from the group, and Goodman also assisted the authors of the briefing. SCIE have confirmed that there have been around 330,000 visits to the end of life pages which are based on the briefing, and over 500 downloads of the full briefing from 2018-20 (data not available prior to 2018) [ 5.8]. Alzheimer’s Disease International (the international federation of Alzheimer associations around the world) cited CoDem four times in its 2016 World Alzheimer’s Report [ 5.9].

Impact on dementia-friendly initiatives

The Dementia Friendly Communities programme, led by Alzheimer’s Society, encourages everyone in England, Wales and Northern Ireland to share responsibility for ensuring that people with dementia feel understood, valued and able to contribute to their community.

The national evaluation of Dementia Friendly Communities (DEMCOM, 3.6) has directly influenced the planning and delivery and support of the programme by the Alzheimer’s Society. It will be used to inform the next five years work to normalise the experience of living with dementia. Specifically, findings have been used to structure how local authorities are involved, how data is collected and how effectiveness is measured. Alzheimer’s Society wrote in 2019 that “the research… on community engagement for people affected by dementia has informed Alzheimer’s Society’s current and future work and support for Dementia Friendly Communities by providing evidence to secure their sustainability” and that “this evidence… has helped Alzheimer’s Society’s planning for extending, evaluating and monitoring the work of Dementia Friendly Communities across England, Wales and Northern Ireland” [ 5.10].

The impact of this research is also starting to spread internationally. Alzheimer’s Society used the findings to brief the World Dementia Council on the impact of meaningful Dementia Friendly initiatives and guidance for the global evaluation of DFCs. The World Dementia Council cited the research in their global advocacy on Dementia Friendly Initiatives, and Goodman advised directly on this work. The DEMCOM findings also provided the basis for the launch event of the first dementia friendly community in Spain and a stakeholder event in Vietnam on dementia and mental health. We have also provided assistance to Dementia Friendly America who are using our research to work on evaluation approaches [ 5.11].

COVID-19: ‘Top Tips for Care Homes’ and advice to government

When Covid-19 hit care homes in early 2020 there was no specific evidence-based guidance to help. To fill this information vacuum the UH team worked to support a network of care home managers via a WhatsApp group. The team worked iteratively with the WhatsApp group to identify eight topics that might help address some of the key questions. A series of rapid reviews were conducted and research-based ‘Top Tips’ were produced, which drew directly on all the team’s care homes studies, to complement emerging COVID-19 policy and practice guidelines. Feedback was largely positive especially as a resource for new and inexperienced staff. Some were reassured that they weren’t missing something, others appreciated that it gave them space to reflect. The Top Tips were downloaded from the NIHR East of England ARC website 333 times by 269 different users between March and December 2020 and have been translated into Spanish. They have been disseminated in Wales and promoted by SCIE, the End of Life Care Partnership, Association of Directors of Public Health, and the National Care Forum [ 5.12].

During the first part of the COVID pandemic in 2020 Goodman briefed the Foreign and Commonwealth Office and Cabinet Office (Health Minister Helen Whatley) on the care home data and evidence of what supports improvement and also briefed (with supporting report) members of the SAGE Social Care Working Group on visiting in care homes [ 5.13].

Impact has been achieved by establishing relationships with parliamentarians, policy makers, practitioners and the commercial and third sectors, to directly inform them about key research findings and to engage them in utilising the research to inform policy and practice. The following sections illustrate some of the impact that has been achieved.

Older people and food

In 2017 the team submitted written evidence to an enquiry into hunger and malnutrition in older people which was set up by the All Party Parliamentary Group (APPG) on Hunger and were then invited to give verbal evidence. They highlighted their research showing factors that make accessing food difficult for many older people; the research was highly cited in the subsequent enquiry report published in January 2018, with eight direct quotes [5.1]. The enquiry particularly drew on the research relating to the importance of supermarkets for older people’s food security.

The team have also engaged directly with the supermarkets themselves to help inform their strategies relating to older people. Using findings from the Food in Later Life study, in 2017 Wills and Dickinson wrote a briefing paper for supermarkets about the steps they could take to improve the shopping experience for older people, including recommendations about ‘slow’ shopping aisles; improving accessible toilet and parking facilities; and marketing/promotions that are appropriate for older people who spend ‘little and often’. They sent targeted letters to senior executives across all national supermarket chains. Subsequently they met with the Head of Customer Experience Strategy at Tesco HQ and presented to the Customer Experience Working Group at Waitrose HQ. Both groups were keen to take this work forward, with the Head of Customer Experience Strategy at Tesco describing the research as “ very clear and helpful” [5.2]. The COVID-19 pandemic, however, has delayed this work.

Also using findings from the Food in Later Life study the team created an educational board game which uses vignettes from participants in the research to highlight the complexities of accessing food in later life. This game was commercialised through ‘serious games’ company Focus Games, who released it for sale in 2018. It has since sold 25 copies to organisations including NHS trusts, social care providers and the third sector. The team have also loaned the game to be played with community dietitians, meals on wheels/lunch club providers, adult social care and carers’ groups, and to academic colleagues to play with undergraduate students on courses including nursing, social work, nutrition and dietetics. Feedback received to date includes: ‘ The game is definitely useful. Has great scenarios to make you think about nutrition and hydration for older people;’ ‘ the group enjoyed exchanging useful ideas about managing their access to food’ (volunteer/chef at lunch club in Plymouth); ‘ It was successful as an informative discussion’ (organiser of Hertfordshire dementia group). The game was selected by Focus Games for conversion to online format during 2020 [ 5.3].

The innovative research methods used in the Kitchen Life study have also had a broader impact on policy making at the Food Standards Agency. The team at the FSA which commissioned the study said in an email in 2020: “ We refer back to the original study fairly often more as a general reminder to policy colleagues that people don’t act in a vacuum – and that what people say is not necessarily what they do. It was the beginning of a more behavioural approach to policymaking which is now pretty well accepted. So I would say it was more the general insights and approach which gave us something new” [ 5.4].

The team have also engaged with the public through the exhibition “25: Lives Seen Through Food.” Based on the research highlighting factors that impede older people’s access to a healthy diet, it has now been exhibited six times including as part of the ESRC Festival of Social Science, and at the East of England Big Bang Fair. During summer 2019 they worked with 80 young people aged 15-16 who were part of the National Citizen Scheme (NCS), engaging them with the research about the challenges older people face to stay well nourished. This inspired them to raise £2,000 for Age UK and to produce a short film to promote third sector organisations and their role in looking after the health and wellbeing of older people. All the main UK newspapers have featured stories based on the research on the importance of supermarkets for older people with a total of 113 news items across 58 different news outlets and 26 radio stations, and a total print/broadcast/internet reach of 27 million.

School Food

Wills and Hamilton regularly attend and contribute to the APPG on School Food, which is chaired by Sharon Hodgson MP and is attended by representatives from civil society/third sector organisations, the National School Food Plan Alliance, the Department for Education, schools and contract caterers. In October 2019 Wills presented her research findings on the importance of understanding the social context of ‘school food’; that the experience of eating is at least as important to young people as the food itself, if not more. [ 5.5]. Wills also submitted written evidence about young people’s food purchasing habits outside of school to the Parliamentary Inquiry into Children’s Future Food; this was directly cited in detail in the Inquiry’s report in 2019 [ 5.6]. Through this inquiry, Wills’ research was cited by a charter produced by the Children’s Right2Food Campaign – a nationwide initiative co-ordinated by the Food Foundation which aims to ensure every child in the UK can access and afford nutritious and healthy food [ 5.7].

As a result of her involvement with the APPG, Wills has joined a wider network of experts in the School Meals arena and has been contacted for advice by a variety of organisations including schools and providers. She has advised both Chartwells and Sodexo, two of the country’s largest school caterers. For the former she provided training materials to assist with developing their secondary school strategy. The team described the work as “ very insightful for us and our Secondary sites moving forward” and outlined how they had engaged with key points on dining room facilities, comparisons with the high street and innovative ways of encouraging pupils to stay in school to eat [ 5.8].

Food Policy and guidance in Scotland

The team’s research on school food was cited by the Scottish Government in their guidance for local authorities, schools, retailers, caterers and other partners on what they can do to influence the food environment around schools and support children and young people to make healthier choices [ 5.9]. The Scottish Government later described this guidance as “driving real change.” The research has also been used by other organisations in response to government policy. Obesity Action Scotland used it in their response to a Scottish Government consultation [ 5.10]. A report written by SPIRU for Assist Facilities Management, a non-profit organisation who promote the facilities management services of all member local authorities in Scotland, cited the research widely in a review of school meal provision. This was then highlighted prominently in the organisation’s November 2019 newsletter which went to all local authorities [ 5.11].

The research investigating young people and parents’ experiences of obesity, and young people’s food purchasing practices resulted in an invitation from Food Standards Scotland (FSS) to Wills to participate in a stakeholder workshop about developing effective dietary guidance for Scotland. The report from the workshop drew on the research finding about hierarchies of worry within low income families which influence whether they consume a healthy diet [ 5.12]. Food Standards Scotland’s Senior Public Health Nutrition Adviser said: ‘ Our dietary guidelines would put healthy eating guidance in the context of real lives...having worked with Professor Wills on related research...I was confident that her expertise would be useful to our discussion. As per Technical Appendix A, the discussion of ‘hierarchy of worry’ pertaining to the conflicting priorities for families around eating healthily can be attributed to Professor Wills research’ [ 5.13]. Wills was then invited to join an academic review panel to continue to develop the Scottish dietary guidance during 2019-20; this has been continued into 2021 due to the COVID-19 pandemic.

Hertfordshire Public Health

The team’s research is highly regarded and used by the Hertfordshire Director of Public Health (DPH) and the County Council public health team. A collaborative group and website, the Hertfordshire Public Health Connect strategic network, has been set up to share research information. As a direct outcome of the network, the Public Health team included details of the research on food in and around schools in its guidance to all schools and catering teams in the county. The research team were also asked to give verbal evidence to a County Council scrutiny enquiry in December 2018 into the low take-up of Free School Meals and the research is cited in the scrutiny enquiry’s subsequent report. Wills has presented research findings at the Hertfordshire Public Health conference, and to a symposium with the DPH and including key individuals from Public Health England and local authority public health departments from across the UK. At this event the Herts DPH highlighted how the strong partnership between the research team and his department was benefiting local approaches to promoting wellbeing. Two UH Research Fellows (Dickinson and Hamilton) will be seconded to the County Council in 2021 to work with local policy makers directly to address food poverty and inequalities [ 5.14].

Drawing on the findings of the research in 3.1, the CRIPACC team carried out a collaborative project with Hertfordshire County Council in 2019 to engage with young people and prioritise issues related to obesity. They worked with 56 young people who were attending the NCS scheme in Stevenage to identify key issues and solutions. Hertfordshire Public Health presented the findings to local counsellors and local authority staff at a Healthy Stevenage Partnership meeting. This consultation has been used by Stevenage Borough Council to improve the active environment for young people in Stevenage, starting with an upgrade of basketball courts. Further work is planned once the pandemic subsides. As a result of the work in Stevenage, Hamilton and Wills were invited by the Scottish Government to plan a similar exercise in Scotland; this is due to be carried out in 2021, having been delayed by the COVID-19 pandemic.

Research into effective decontamination of casualties exposed to the release of toxic materials has shaped policy and practice in the UK and US on responding to CBRN incidents. This programme of work was awarded Research Project of the Year: STEM in the Times Higher Education Awards (2018), which recognises ‘ innovative research in STEM subjects that has a far-reaching impact’.

Establishing new US policy guidance for CBRN responses

The PRISM guidance [ 3.1], written by Chilcott and colleagues and published by the US government, was the first evidence-based US federal guidance for responding to terrorist incidents or accidents that lead to the exposure of mass casualties to hazardous materials. According to BARDA: “ Effective decontamination is the best way to protect health against chemical exposure and is the only generic medical countermeasure available against multiple chemical threats. However, there was no standard, scientifically supported practice for performing it in the United States before BARDA asked the University of Hertfordshire to undertake rigorous studies” [ 5.1].

BARDA has recommended PRISM for use by the entire US first responder community of over a million people (Fire Departments, Emergency Medical Services and Police) and it underpins the development of Tribal, County, State and Federal Government policies for chemical response management. PRISM is key to “saving lives and improving our response capabilities for both terrorism and accidental chemical release”, according to BARDA, noting its “widespread and significant impact on societal preparedness” in the United States [ 5.1].

As part of US Government efforts to publicise the guidance to its agencies the Assistant Secretary for Preparedness and Response at the US Department of Health and Human Services (HHS), cited the UH studies extensively in an interview with Homeland Preparedness News in March 2018. He said: “Dousing someone fully clothed with a fire hose, which is a common practice, potentially pushes chemicals into the skin causing greater harm. Emergency planners and first responders need to know about the studies and the resulting PRISM guidance, so they can incorporate the proven approach into their emergency plans and exercises” [ 5.2].

In 2019, both PRISM and the ASPIRE decision support tool were made available online to all services in the US, including being incorporated into the Chemical Hazards Emergency Medical Management (CHEMM) web-based resource, managed by HHS and the US National Library of Medicine (NLM) [ 5.3]. The University of Hertfordshire team also worked with NLM to incorporate PRISM and APSIRE into the WISER mobile and desktop app (Wireless Information System for Emergency Responders). This app was downloaded 128,787 times in its first five months, including many organisational downloads that then make the app available to individual employees [ 5.3]. In an interview with Infection Control Today the director of BARDA said: “Building on the first ground-breaking studies and guidance, we now have a larger body of scientific evidence that is incorporated into the latest guidance, and we have made it even easier for responders to use in preparing for disasters and on the scene in an emergency.”

Speaking to Nature in 2019, the deputy director for BARDA said he hoped that governments and first responders elsewhere, especially in the Middle East, will use the guidelines, pointing out that videos of chemical weapons attacks in Syria suggested that people lacked the basic information needed to quickly decontaminate themselves. The article also quoted the Director of Policy at New York-based Physicians for Human Rights, which advises frontline health workers in the Middle East on chemical attacks, as saying that the guidance will be helpful for responders in war zones [ 5.2].

Establishing new UK policy guidance for CBRN responses

Findings from the UH-led EDICTAS study were translated into new protocols for improvised decontamination by first responders at the scene of a chemical incident. This formed the basis of the Home Office’s Initial Operational Response (IOR) to a CBRN incident [ 5.4].

Prior to the publication of this guidance in July 2015, initial responders were trained to stand off and wait for specialist responders to arrive, which, according to the IOR report, was “n ormally considerably later than the optimal time for saving life.” The guidance states: “The IOR provides the process by which all responders first on the scene of a contamination incident can follow a number of steps to safely save lives during the most critical early stages of the incident.” [ 5.4]

The IOR was a key part of wider guidance published in September 2016: Responding to a CBRN(e) event: Joint operating principles for the emergency services [ 5.5]. It includes the IOR, the Specialist Operational Response (for specialist units arriving after first responders) and the transition between the two phases. UH research underpinned the document’s guidelines on effective decontamination. The guidance was published by JESIP (Joint Emergency Services Interoperability Principles), which is run by the emergency services (police, fire and ambulance) with support and oversight from three government departments. Chilcott was the lead scientist on the Home Office-led working group that authored the guidance.

According to JESIP, the guidance was published to respond to the need for a “dynamic and joint approach” by the emergency services and other agencies and to “create a faster, more agile, flexible, scalable and interoperable response” [ 5.5]. These decontamination protocols also appear throughout PHE’s 2018 handbook for public health and health protection professionals: CBRN incidents: clinical management and health protection [ 5.6].

A Home Office official said Chilcott’s research “has been fundamental not only in the area of mass decontamination but also in the ability of local emergency (services) to effectively respond to individual chemical assaults using corrosive materials” [ 5.7]. The official said the Minister for Security referred directly to Chilcott’s research when giving oral evidence (Sept 2016) to the House of Commons Select Committee on Science and Technology during its inquiry into UK responses to CBRN events. Earlier, in May 2016, the Home Office, in written evidence to the same inquiry, highlighted the evidence-based nature of its CBRN response protocols, noting “ University of Hertfordshire scientists” are “having a major impact on how we decontaminate casualties” [ 5.7].

As an indication of the scenarios in which these new CBRN emergency response protocols are applied in practice, the guidelines were followed in the aftermath of the ‘novichok’ nerve agent attack in Salisbury in 2018. This is confirmed in a published letter (May 11, 2018) by the Minister of State for Security and Economic Crime to the Chair of the Science and Technology Select Committee in which he writes: “…the capabilities held at readiness for a CBRN incident were employed as they were the most appropriate capabilities to respond to the circumstances.” [ 5.8] The protocols would also have been followed in August 2017 when a ‘chemical cloud’ drifted from out at sea onto a beach in East Sussex, resulting in 150 people seeking medical treatment, as well as in chemical attack practice drills in the UK (as context, the London Fire Commissioner publicly announced an increase in such drills in January 2017).

Changing approach of UK emergency responders to CBRN incidents

All emergency services in the UK are required to follow the Government’s new CBRN response and decontamination protocols. The National Ambulance Resilience Unit (NARU), which works with all NHS Trusts in England, published two training videos in 2015, one for ambulance services and one for the wider NHS. Both featured interviews on the decontamination protocols with Chilcott. A DVD was circulated to all hospitals in England to support the rollout of the IOR [ 5.9].

In April 2015 NHS England’s Emergency Preparedness, Resilience and Response (EPRR) team published: Chemical incidents: Planning for the management of self-presenting patients in healthcare settings. It included details of the IOR, informed by UH research, and the target audiences were NHS Chief Executives, Medical Directors, Directors of Nursing, NHS Trust Board Chairs and GPs [ 5.9]. In 2018 NHS England and NARU refreshed its IOR messaging through its Remove, Remove, Remove campaign. According to NARU, the poster and an aide memoire were designed to “make core elements (of the IOR) quicker and easier to absorb, remember and apply, allowing first responders to significantly reduce harm to affected casualties” [ 5.9].

NHS England’s EPRR lead for London writes that Chilcott and his team “have made a significant contribution to the development and implementation of NHS response procedures and guidance to a chemical incident - both in the form of leading the underpinning research efforts and as subject matter experts on relevant UK Government committees” [ 5.9].

PHE confirms the IOR “regularly informs training and preparedness within acute healthcare settings” and the optimisation of the SOR, based on UH research, is “a key aspect of the training of, for example, Fire Service Mass Decontamination Instructors” [ 5.10]. It says: “Prof Chilcott’s work has contributed to our training materials for emergency planning and response professionals. Our e-learning module on Decontamination includes this work and specifically references their publications. Further, we cite their work in training we are conducting with European partners for EU emergency response professionals” [ 5.10]. As an indication of how widely the CBRN guidelines are informing training, modules on CBRN operational responses are publicised online by the College of Policing, NARU and local NHS trusts, fire services and police forces [ 5.11].

UH research on NPS has: directly influenced action by the UK Government and public bodies to introduce new legislation, regulation and guidance to protect public health; changed NPS clinical and prescribing guidelines for health professionals; secured the first Home Office license for a drug checking service; and informed drug prevention strategies in the UK and overseas.

Impact on UK drug legislation, regulation and policymaking

UH research into NPS has been used by UK policymakers to identify the scale and nature of NPS use and its associated risks. Several papers published by the UH Unit were cited in the Home Office’s New Psychoactive Substances in England: A review of the evidence (2014) [ 5.1]. The research has fed directly into the deliberations and recommendations of the ACMD on some of the most potentially harmful NPS on the market. Schifano was a full ACMD member until reaching his term limit in 2019; Corkery was a member of the ACMD’s NPS Committee [ 5.2].

In 2015 the ACMD reviewed the harms associated with the misuse of pregabalin and gabapentin. ONS data had shown a sharp rise in deaths related to pregabalin (four in 2012 to 38 in 2014) and gabapentin (nine in 2013 to 26 in 2014). Studies led by Schifano had been raising safety concerns over the drugs; as an ACMD member, Schifano contributed his research insights, specifically 3.4 and 3.5, to the Review. The ACMD chair wrote to the Home Office Minister in January 2016, recommending the control of pregabalin and gabapentin as Class C substances. Paper 3.4 was cited in the recommendation [ 5.3]. This also referenced a review published by PHE and NHSE (2014) which in turn cited research by Schifano and Corazza as part of its evidence base [ 5.4]. Responding to the ACMD, the Government announced, in 2018, the reclassification of pregabalin and gabapentin as Class C controlled substances. Stronger controls were put in place to minimise the risk of stockpiling by patients.

Under [ G2], in 2016 Corkery identified the first known death from ‘ complications of 4F-EPH’ (4- Fluoroethylphenidate). This molecule is an analogue of the medication Ritalin (methylphenidate). He also identified five deaths where ethylphenidate, an amphetamine-like psychostimulant, was implicated in the cause of death. As an ACMD NPS Committee member, Corkery published this data in the ACMD’s report sent to the Home Office minister in March 2017 [ 5.5]. It recommended the control of 12 methylphenidate-related NPS, including 4F-EPH and ethylphenidate, as Class B substances. Only two months later, the molecules became Class B drugs following the passing of secondary legislation under the Misuse of Drugs Act 1971 and a Home Office circular was immediately sent to police forces and criminal justice bodies drawing their attention to the law change [ 5.5].

Fentanyl is a licensed medicine for anaesthesia and pain management; it is also classified as an illegal Class A substance in the UK. In 2017, the Home Secretary, responding to increasing fentanyl-related deaths, commissioned the ACMD to review the number of known fentanyl analogues – and their known and likely risk factors. The ACMD’s NPS Committee analysed the misuse potential of fentanyl compounds and associated harms. Key evidence was UH’s 10-year assessment of fentanyl misuse in the UK, EU and US [ 3.7], which Corkery, as a committee member, fed directly into the review process [ 5.6]. The conclusions in the ACMD report, published in January 2020 and covered widely in the media, mirrored those in 3.7: ‘ fentanyl and fentanyl analogues present a significant risk to UK public health’ and ‘ current monitoring and surveillance systems should be adapted to help identify the true scale of this threat’. It warned, as noted in 3.7, that a rise in the number of deaths in the UK was being driven by fentanyl being added to heroin. The Home Office said it would ‘ carefully consider’ the recommendations in its policy response.

In January 2020 the Home Secretary asked the ACMD to urgently review GHB, GBL and closely related compounds, responding to the use of GHB by the serial killer Stephen Port and suspected use of GHB by serial rapist Reynhard Sinaga. The ACMD published its report, widely covered in the media, in November 2020, recommending that GHB should become a Class B drug. Corkery’s studies at UH, including 3.8, were cited 25 times as key evidence for the conclusions [ 5.7].

Impact on clinical and prescribing guidelines and practice

In July 2017 the Department of Health published Drug misuse and dependence: UK guidelines for clinical management for healthcare professionals. The chapter Misuse of or dependence on gabapentinoids used 3.4 as key evidence, warning that ‘ prescribers need to be aware of the risk that some patients may wish to accumulate supplies with a view to taking excessive doses for a psychoactive effect’. It noted ‘ accumulating’ evidence of gabapentinoid misuse, particularly in those who misuse other drugs [ 5.8]. In 2018 the Royal College of Psychiatrists published Our Invisible Addicts, a report setting out the extent of substance-related health problems amongst older people. Citing 3.5, it highlighted the increase in adverse drug reactions associated with pregabalin and advised that ‘ vigilance is needed when co-prescribing pregabalin with opioid drugs’ [ 5.9]. Through a collaboration with the Royal Pharmaceutical Society (RPS), research under G2 and G3 formed the basis of a new section in the Society’s 2018 edition of its Medicines, Ethics and Practice textbook, informing pharmacists about how NPS are controlled and associated harms. The textbook is accessed by all pharmacies in the UK and is part of both undergraduate pharmacy studies and pharmacy pre-registration national assessment. To accompany this, Guirguis co-authored an online NPS ‘quick reference guide’ that was made available in April 2018 to 27,000 RPS members, along with a factsheet for pharmacists available to both members and non-members [ 5.10].

Research into misuse of tropicamide [ 3.6] was carried out in response to an ‘ alarming’ rise in the non-prescription sale of tropicamide in pharmacies in Trentino, Italy [ 5.11]. The peer-reviewed paper and UH’s follow-up review in Human Psychopharmacology in 2015 led to the Provincial Health Services Agency issuing an advisory notice to all physicians and pharmacists in Italy that tropicamide should not be sold without prescription. Product sales dropped as a result [ 5.11].

Impact on authorities’ drug prevention strategies and the legal profession

Novel UH research into identifying emerging NPS via handheld spectroscopy [ 3.3, G3], in order to support police and staff in prisons and substance misuse units, resulted in the first drug checking service to be licensed by the UK Home Office. The drop-in service, a partnership between UH (PI: Guirguis) and charity Addaction, was run for the first time in Somerset in 2019; it allows people to have a sample of their drugs tested (using handheld spectroscopy) anonymously and to receive specialist advice. Covered widely in the media, an article in the Guardian [ 5.12] said the service ‘ marks a milestone for the harm reduction movement as well as a significant shift in government support for the approach’. It quoted the drugs strategy lead at Avon and Somerset police as saying: ‘ We are confident that this approach will help those who are determined to take drugs keep safe from harm, inform them of the health dangers and remind them of the criminal consequences they could face’ [ 5.12]. In June 2019 the service was cited by a witness giving oral evidence on the benefits of drug testing to the Health and Social Care Select Committee inquiry into UK drugs policy. The Committee’s report, published in October 2019, highlighted such testing as ‘ an effective early warning system … about particular batches of drugs and the dangers they might pose, enabling public health messages to be put out to reduce wider harm’ [ 5.13].

The spectroscopy studies have helped coroners assess NPS-related fatalities. Guirgius acted as an Expert Witness for an inquest held in July 2019 in New South Wales, Australia into the deaths of six young people at music festivals. The coroners’ report cited 3.3, discussed the Home Office-licensed checking service at length and referred to Guirguis’s evidence 46 times [ 5.14]. The state premier and police had previously made their opposition to drug checking clear but the report made this key recommendation: ‘ That the Department of Premier and Cabinet permits and facilitates Pill Testing Australia, The Loop Australia, or another similarly qualified organisation to run front of house medically supervised pill testing/drug checking at music festivals in NSW’ [ 5.14].

Based on the Unit’s combined research and collaboration with UN agencies under G2 and G3, the UN Office on Drugs and Crime (UNODC) asked Corazza to carry out the evidence analysis and prepare the first draft of Volume 21 of its Global Synthetics Monitoring: Analyses, Reporting and Trends (SMART) Update: Understanding the global opioid crisis. Published in English, Russian and Spanish, the UNODC emphasised its importance ‘ in enhancing international understanding of the threats posed by the non-medical use of opioids and identifying options for response’ [ 5.15].

Through ongoing collaboration with the Department of Health and Social Care (DHSC) and Public Health England (PHE), data from the HBSC England study has directly contributed to UK parliamentary debate and policy making decisions. Policy makers have used the reports directly, plus both DHSC and PHE have commissioned the team to undertake further analysis of the data on key topics of interest. Jane Ellison, Public Health Minister, welcomed the 2014 HBSC National Report as a tool to better understand young people’s health and well-being and identify areas which require further policy attention. The following are examples of key areas of impact arising from the research:

Directly influenced policy debate on young people’s soft drink consumption. Data on the consumption of sugar-sweetened beverages from the 2010 study was cited in the Government policy document “Childhood obesity: A plan for action” which proposed a soft drinks industry levy as a step towards combating childhood obesity [ 5.1]. In 2015, the Government commissioned Brooks and her team to further analyse the HBSC data relating to the consumption of energy drinks. In their analysis they found that children in receipt of free school meals disproportionately consumed energy drinks. This data informed the decision to open a consultation to investigate how to reduce the consumption of energy drinks among young people [ 5.2]. The final report from the House of Commons Science and Technology Committee was published in 2018 and cited our research which established that energy drink consumption was associated with both free school meal eligibility and poorer sleep [ 5.3]. The report featured as a Parliamentary news item “MPs support action to reduce energy drink consumption among children” (04/12/2018), referencing HBSC England findings establishing disproportionate energy drink consumption among young people receiving free school meals.

Contributed to the evidence base resulting in statutory status of health education, and sex and relationship education in schools across England. The Deputy Director for Health and Wellbeing at PHE referred to our 2014 findings which captured young people’s perception of PSHE Education when providing oral evidence to the House of Commons Education Committee

inquiry into “PSHE Education and Sex and Relationship Education (SRE) in Schools” [ 5.4]. PHE also provided written evidence which referenced our research findings on “protective lifestyle behaviours such as regular physical activity and healthy eating” as key health behaviour outcomes [ 5.5]. The committee then requested further information to supplement both the oral and written evidence. PHE supplied written evidence in response, presenting a summary of key findings relating to PHSE from the 2014 HBSC survey [ 5.6]

Subsequently the team’s data on young people’s perspective and experience of PSHE and SRE featured in the House of Commons Education Committee final report “Life Lessons: PSHE and SRE in Schools” [ 5.7]. HBSC data contributed to the sections titled “Outcomes-based arguments: does SRE work?” and “Student perceptions of quality”. The report concluded that PSHE warrants statutory status, and as a result, health education in all schools, relationships education in primary schools and SRE in secondary schools was made compulsory from 2020.

The PSHE Association report that they have used HBSC data in two main contexts: when delivering training to PSHE practitioners, and in making the case for the value of PSHE education in schools; they describe it as “extremely useful to have an overview of key trends in young people’s health and wellbeing… it’s vital to get an idea of what the priorities are and the HBSC survey makes a vital contribution building this picture” [ 5.8]. A PSHE Association Subject Specialist who has used HBSC data in the context of delivering training described the national report as “ an incredibly useful tool” which can “help inform discussions with teachers”. In 2015 they commissioned additional analysis from the team, examining the relationship between PSHE provision and young people’s well-being [ 5.9].

Informed guidance on young people’s mental health and well-being. The team’s findings on the prevalence of cyber-bullying were cited by PHE and jointly by DHSC and the Department for Education (DfE) when they provided written evidence to the House of Commons Education and Health Select Committee inquiry “Children and young people’s mental health – the role of education”. Consequently, the team’s cyber-bullying prevalence data was included in the final committee report [ 5.10]. The resulting DHSC and DfE green paper “Transforming children and young people’s mental health provision” also reported the team’s data on cyber-bullying in Chapter 1, which “sets out the key evidence that has informed the development of the proposals in this green paper”; the green paper proposed that every school has a designated mental health lead [ 5.11].

PHE commissioned three reports from the HBSC research team on self-harm, cyber-bullying and girls’ well-being. These were intended for “a range of audiences interested in promoting children and young people’s mental wellbeing” including “local public health specialists, school nurses, head teachers and college principals” [ 5.12]. PHE also cited the team’s self-harm data in their resource outlining key actions head-teachers can take to improve young people’s well-being [ 5.13]. The All Party Parliamentary Group on Bullying requested a presentation of the 2014 HBSC England cyber-bullying data (delivered on 11/07/2017). Further, the children’s mental health charity YoungMinds requested evidence directly from the research team for an inquiry into cyber-bullying in 2017. YoungMinds’ final report referenced the team’s data on gender differences in cyber-bullying and increased rates of sleeping difficulties among victims of cyber-bullying, with the report setting out recommendations for both government and social media companies [ 5.14].

Directly influenced school practice and policy. Schools participating in the research are provided with a report comparing them, across a range of indicators, with the national average obtained in the HBSC England study. An online survey and follow-up interviews were carried out to assess how participating schools had utilised the reports. The reports influenced a number of practices in schools including lessons, student involvement and school policy. For example, one teacher described the report as “ a catalyst”, and explained that they had consequently established “ a whole school survey, an action for change student group and created anti-bullying

ambassadors”. Similarly, another teacher stated that the report “directed our thinking around curriculum”; young people’s perceptions of SRE resulted in the school dedicating a whole day to the topic, delivered by external providers [ 5.15].

HBSC England data widely cited in international reports. Every four years WHO publishes cross-national comparisons from the HBSC study. Members of the HBSC England team co-authored specific chapters of the 2012, 2016 and 2020 international reports. WHO Europe state that “HBSC data have been used to underpin the WHO European strategy for child and adolescent health” [ 5.16]. For example, the data was used in the European Health Report for 2018 [ 5.17]. The data has also been employed by other international agencies, including UNICEF who have used it in their Innocenti Report Cards which aim to monitor and compare progress and ‘best practice’ for children in the world’s advanced industrial economies [ 5.18].

Contributed to public debate. HBSC findings have been widely reported on, including by the Daily Mail, Telegraph, the British Psychological Society and Medical Xpress. Data on bullying was publicly disseminated via a university press release during Anti-Bullying Week in 2017, resulting in articles on BBC News, Schools Week (an education sector website) and the Conversation. HBSC findings relating to self-harm have received significant media coverage, including articles in the Guardian and Independent, and resulted in Professor Fiona Brooks being interviewed on BBC Newsnight [ 5.19].