Exeter PRP Evidence Review Facility

Rare diseases are diseases which affect fewer than 1 in 2000 people. The England 2023 Rare Disease Action Plan is committed to addressing health inequities associated with rare diseases, i.e. systematic, avoidable and unfair differences in health between the rare disease community and the general population, or between different rare diseases communities. This commitment builds on the UK Rare Diseases Framework, which sets out four priorities including: ensuring patients get the right diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments and drugs.

Although there is evidence that health inequity is experienced by specific groups within the rare disease community, there is no overall understanding of the extent of the evidence across the rare disease community. This includes whether there is evidence of health inequity within the rare disease community, and also between the rare disease community and the general population. We have been commissioned by the NIHR Policy Research Programme to identify and summarise evidence on health inequities experienced by the rare disease community, with a specific focus on inequities related to receipt of a diagnosis or access to health and social care services. We will fulfil this aim by carrying out a scoping review which will systematically identify and describe the available evidence which addresses our research aim. In particular, we will draw out findings relevant to the UK context. The project is being carried out in response to a request for evidence in this area by the UK Department of Health and Social Care (DHSC) Rare Diseases and Emerging Therapies policy team.

We began the project in February 2024 and expect the report to be available in February 2025. We plan to write up the findings in a report which will be submitted to the Rare Diseases and Emerging Therapies policy team.

The protocol for this project can be found here: http://hdl.handle.net/10871/135276

Status: Complete

Please find here a video summarising this work:

In this meeting, the review team presented the background and findings from this review and narrative synthesis, alongside the potential implications for future research, clinical practice and policy making.

What do we want to know?
The environmental footprint of healthcare services contributes between 1% and 5% towards the total global environmental impacts.(1, 2) In 2008, the Climate Change Act set national targets for the 100 percent reduction of carbon emissions in England of 1990 levels by 2050.(3) The National Health Service (NHS) has an important role in helping to achieve these targets, as the organisation accounts for 4% of England’s carbon-footprint.(4) Work focusing on identifying and delivering interventions to reduce carbon emissions within known carbon hotspots, such as NHS estates and facilities, travel and transport, supply chain, and certain medicines and medical and anaesthetic gases that have high global warming potential is already underway, alongside examining the effectiveness of different models of care delivery across all specialities.(4, 5) Evidence focusing on the effectiveness of interventions in reducing carbon emissions within secondary healthcare would be a useful complement to this work. An approach which also considers the patient pathway may be beneficial in identifying interventions which consider wider healthcare systems and thus have a meaningful impact on reducing carbon emissions.

We aimed to carry out a systematic review which examined the effectiveness of interventions in reducing the carbon footprint within specific medical specialities in secondary healthcare and explored where this evidence could inform the patient care pathway.

Research questions
What is the effectiveness of interventions for reducing the carbon footprint of medical interventions carried out in the following medical specialties within secondary healthcare:

• Cardiology
• Gastroenterology
• Ophthalmology
• Orthopaedics and trauma
• Renal
• Respiratory
• High volume low complexity surgery;
  • Ear, nose and throat
  • Gynaecology
  • Urology

We focused our research question on medical specialties with high levels of inpatient activity as these are likely to have the greatest impact on carbon emissions.

What we did
We carried out a systematic review of quantitative evidence evaluating the effectiveness of interventions intending to reduce carbon emissions within secondary healthcare in the specialities listed above. We searched a selection of bibliographic databases with coverage of both health care and environmental science journals, which we supplemented by inspecting the HealthcareLCA database, conducting forwards and backwards citation chasing on all studies which met our inclusion criteria, searching reference lists of topically relevant reviews, and searching Google Scholar and a selection of relevant websites.

Two reviewers independently carried out title/abstract and full-text screening using a list of pre-determined inclusion and exclusion criteria, with disagreements resolved through discussion. We extracted descriptive data regarding study sample, intervention/control group, carbon emission methodology, PROGRESS-PLUS criteria (related to equity) and environmental, patient and cost outcomes. We appraised the quality of studies using life cycle assessment (LCA) methods with a predetermined scoring system informed by Weidema’s (1997) guidelines.

We synthesised the findings from LCA and non-LCA studies separately using narrative synthesis. Within each of these groups, studies were grouped into five broad intervention categories, 1) Accessing care, 2) Product level, 3) Care Delivery, 4) Setting and 5) Multiple components (detail regarding interventions included within each of these categories can be found in Table 3 of this report). We looked for, and tried to explain, patterns across studies within the same specialty which evaluated similar interventions. We also developed an evidence and gap map to highlight where evidence relevant to the aims of this review could inform a generic patient care pathway for each speciality and inform the future of research towards lower carbon pathways. To provide an accessible structure, the systematic review evidence is mapped according to speciality, intervention and how each review may be used within the patient care pathway, from assessment and initial treatment, through to discharge from secondary care.

Input from the Greener NHS team at NHS England, LCA methods experts and patient and public representatives was incorporated throughout.

What did we find?
Eighty-nine studies (93 articles) met the eligibility criteria for inclusion.

Twenty-nine studies used life-cycle assessment (LCA) informed methods to calculate carbon emissions, 19 of these utilised a full LCA approach, comprising both:

1. an inventory analysis, evaluating the energy consumption, emissions and resources associated with an intervention throughout the life-cycle of the product, process or activity, and;
2. an impact assessment, converting inventory data from the life cycle assessment into a set of potential impacts on the environment (e.g. carbon emissions, eutrophication, ecosystem quality, non-renewable resources etc.). 

Of the 33 studies conducted within the UK, one of these used full LCA methods. Urology (n=14), gastroenterology (n=13), oncology/radiation oncology (n=13) and renal (n=11) were the most common specialities represented.

Across different specialities, the majority of evidence was found in the first three stages of the patient care pathway (Initial assessment/diagnostic tests, initial treatment or follow-up). The exception to this was the renal specialty, where most of the evidence was within the ‘Ongoing care’ segment of the patient care pathway. There was limited evidence within the ‘Discharge’ segment of the care pathway across all specialities. Evidence relating to the wider healthcare setting was clustered within the gastroenterology (n=5) and radiology specialities (n=5). This evidence is displayed in an evidence and gap map.

Within the narrative synthesis, the number of studies in each broad intervention category was as follows: Accessing care: 29, Setting: 20, Product level: 17, Care delivery: 16 and Multiple components: 7.

The two largest groups of evidence were for studies evaluating telehealth (n=26) and reuseable equipment (n=13) interventions. Telehealth interventions were predominantly evaluated using non-LCA methods (n=23) and, whilst carbon-emissions favoured telemedicine interventions when compared to face-to-face care, these calculations often only considered patient-travel saved and did not account for carbon emissions associated with other parts of the delivery of the service, such as digital technology used or the energy use of building or clinic equipment for face to face appointments, or wider impact on the patient care pathway such as potential need to travel for additional primary care appointments. In general, the majority of patient and cost outcomes evaluated, favoured the telemedicine intervention, although most outcomes were based on descriptive or narrative analyses. Interventions comparing carbon emissions associated with the use of reuseable versus disposable surgical equipment represented the largest group of studies using LCA methods. For studies within the gastroenterology speciality, reuseable equipment was associated with reduced carbon-emissions. Within urology this finding was more uncertain, with three of the five studies finding disposable instruments to be associated with reduced carbon emissions. However, despite studies relating to this latter finding mainly being appraised as ‘High’ or ‘Medium’ quality, questions regarding the accuracy of use of characterization factors, quantity of materials used in disposable vs reuseable equipment packs and how carbon emissions were assigned to the reprocessing stage of reuseable equipment mean confidence in this finding is uncertain. In general, four of the five studies comparing reuseable and disposable urology equipment scored poorly on the quality appraisal item evaluating the reporting and potential influence of study funding and author conflicts of interest. Whilst waste management/reduction interventions were associated with reduced carbon emissions (n=12), interventions were highly heterogeneous with limited consideration of patient or cost outcomes. Eight non-LCA studies found reduced carbon emissions were associated with energy conservation interventions, such as turning equipment off when not in use or choosing imaging techniques with lower energy use, the majority of which were conducted within radiology/radiotherapy settings.

Key limitations to the evidence included within the review:

• A high degree of heterogeneity amongst types of intervention conducted within individual specialities, which made it challenging to identify interventions which were effective in reducing carbon emissions across different contexts.
• The number of studies including patient and cost outcomes alongside carbon emission calculations was also limited.
• Within studies drawing on an LCA approach, the lack of transparency in the reporting of methodological details raised issues of comparability and generalisability. Comparability was also hindered by the lack of consistency in how studies defined and reported the system boundaries for individual LCA studies.
• Carbon emission calculations used within non-LCA studies were typically narrow in scope, focusing on the “use and/or reuse” of products, with less consideration of other factors within the wider system which may also influence carbon emissions of the intervention under consideration, for example, energy used by both health services and patients.
• The extent to which carbon-emission calculations in non-LCA studies considered emissions associated with manufacture of equipment, vehicles or fuel, transport and/or waste management was also limited and dependant on the intervention in question.
• Comparisons between intervention/control groups in non-LCA made predominantly using non-statistical analysis.

What are the implications?
Research: Existing research relating to carbon emissions reflects a narrow range of all the possible interventions/specialties available. Further research needed to fill the gaps is highlighted in the evidence and gap map. Studies utilising full LCA methods were underrepresented. The uncertainty regarding the beneficial effects of reuseable equipment on carbon-emissions within urology underscores the importance of considering the full product pathway within an LCA approach and ensuring the system boundaries for the change being considered reflect all parts of the patient care pathway and product life-cycle. It also emphasises the importance of incorporating sensitivity analysis into LCAs and highlights the importance of considering mechanisms to reduce carbon emissions associated with the processes supporting the manufacture, transport and reprocessing of disposable and/or reuseable equipment as a target for future interventions.

Whilst LCAs may not always be appropriate or possible to conduct within healthcare settings, guidance for researchers examining the effectiveness of interventions intended to reduce carbon emissions using non-LCA study designs is needed to ensure all relevant factors relating to carbon-emissions from patient-care and emission pathways are considered.

Future primary research is needed which considers environmental outcomes alongside clinical/patient and cost outcomes to inform future policy and clinical practice.

Research evaluating telehealth interventions needs to ensure the digital carbon footprint is fully considered, alongside enduring the technology is used effectively to maximise patient outcomes and reduce cost across primary and secondary care.

Practice: Patient and cost-outcomes were rarely considered alongside carbon emission calculations in the body of research evaluated. Hence, whilst there is tentative evidence to indicate that interventions which reduce the distance patients need to travel to access care is associated with reduced carbon emissions, the impact on patient clinical outcomes and patient satisfaction is inconclusive. There is also tentative evidence to indicate that reuseable surgical equipment is associated with reduced carbon emissions when compared with single-use within certain specialties. However, this is influenced by the composition of the instrument and how the reprocessing of reuseable units is carried out (e.g. number of units reprocessed at any one time and duration of reprocessing procedures) within specific local contexts.

Policy: The evidence and gap map provides a resource to identify where gaps in primary evidence exist on the patient care pathway both within and across different specialties, making it a useful tool to inform the commissioning of future research. The narrative synthesis considers the quality and quantity of evidence available to support the use of specific interventions to reduce carbon emissions within individual specialties. Our review highlights the larger groups of evidence available pertaining to the use of telehealth care and reuseable surgical equipment across different specialties and its methodological limitations which may influence the commissioning of future research and the implementation of interventions within secondary healthcare. 

The final report can be found here. We have also produced a briefing paper, slides and cartoons. Please find the protocol here. The evidence and gap map can be found here. 

Status: Complete 

Background 

Autistic people and people with elevated autistic traits are at a higher risk of suicidality (suicidal ideation, suicide plans, suicide attempts) than the general population, with a recent systematic review indicating that over a third of autistic and possibly autistic people without co-occurring intellectual disability experienced suicidal ideation, suicidal attempts and/or behaviour. These estimates are considerably higher than those in the general population (where suicidal ideation is estimated to be 9%). The high prevalence of suicidality has been associated with a lack of support for autistic people. Therefore, the NHS Long Term Plan and Building the Right Support has committed to increasing the availability and accessibility of community mental health support, including crisis support, for autistic people to reduce the need for inpatient mental health care and ‘preventable deaths’. The Department of Health & Social Care (DHSC) identified autistic people as a key group of concern in the National Suicide Prevention Strategy for England and committed to building the evidence on preventing suicidality for autistic people to develop evidence-based policy and guidance. 

To support this work, the University of Exeter Policy Research Programme (PRP) Evidence Review Facility was independently commissioned to undertake a scoping review to better understand the quantity and nature of existing primary research evaluating interventions to support autistic people experiencing suicidality. 

Research Question 

What is the quantity, range and nature of studies on the effectiveness, cost-effectiveness and experiences of interventions to reduce suicidality for autistic people?  

What we did 

We searched a selection of bibliographic databases, including trial registries, conducted backwards citation chasing on all studies which met our inclusion criteria and searched reference lists of topically relevant reviews, alongside a selection of relevant websites. 

Two reviewers independently carried out title/abstract and full-text screening using a list of pre-determined inclusion and exclusion criteria, with disagreements resolved through discussion. We extracted descriptive data regarding study sample, methods, screening tool used, intervention/control group and key outcomes measured. We appraised the quality of each complete study that met our inclusion criteria using the Mixed-Methods Appraisal Tool. 

What did we find? 

Overview

• 27 studies (reported in 28 articles) were included in this scoping review, of which 16 were completed studies published as journal articles. 
• Studies were primarily from high-income, western countries. The most common country represented was the USA (n=14). Three studies were conducted within the UK. 
• Studies focused on evaluating or developing interventions to reduce suicidality (n=17) or studies which aimed to evaluate or develop screening procedures to identify individuals with autism who may be at risk of dying by suicide (n=9), with 1 study belonging to both categories. 
• The 18 studies focusing on evaluating or developing interventions could be categorised into one of six groups: safety planning (n=5), Dialectical behaviour therapy (DBT) (n=4), Cognitive Behaviour Therapy (CBT) (n=2), Psychosocial therapy: other (n=2), Training (n=3) and ECT/rTMS (n=2). 
• 10 studies evaluated suicide screening procedures; 5 focused on the use of the Ask Suicide Screening Questions (ASQ), 3 evaluated the feasibility/useability of other universal screening tools for people with autism, and 2 studies explored broader attitudes towards screening practices to identify individuals who may be at risk of suicide. 

Key limitations to the evidence included within the review 

• Abstracts and trial registry items were sparse in details and often important information on adaptations for autism were not reported.  
• Limited number of completed studies using robust effectiveness methods, such as RCTs, evaluating the same or similar interventions or screening programmes/approaches. 
• No cost-effectiveness evidence. 
• Little explanation of theoretical basis for interventions evaluated. 
• Small sample sizes, with limited representation of those from minority ethnic groups and cultures. 

Implications for future research 

• Larger randomised controlled trials are required to better establish the effectiveness of the interventions highlighted above. These could be accompanied by a qualitative element to explore patient, carer and clinician experiences of receiving and delivering the intervention to generate more robust insights into factors which could influence patient engagement and the interventions longer-term efficacy. 
• Development of other future interventions should consider the adaptations required for individuals with autism to allow them to fully engage with the intervention process and content and address the characteristics of people with autism which increases their risk of experiencing suicidality. 
• Further studies to validate the use of the ASQ and other tools to identify suicidality in this population are needed alongside qualitative research exploring service user, carer and clinician perspectives is required. Randomized controlled trials evaluating which screening tools may be most useful outside of emergency or hospital settings is also needed. 
• Future research should aim to involve people with autism and those who support them to inform the development and implementation of interventions and screening practices. This participatory research, as well as the sample population within individual research studies themselves, should also seek to include underrepresented groups, such as women and people from ethnic minorities, and ensure a wide diversity of autism perspectives. This will help ensure future interventions and screening procedures more accurately identify and meet the needs of the wider autistic population. 

Sharing our findings

The protocol can be found here and we will update this page with the final report and journal article when published.

Hearing loss is prevalent across the world, including in the UK. The negative effects of hearing loss on quality of life are associated with socio-economic inequalities, including more limited employment opportunities and social isolation. Furthermore, risk factors for hearing loss are stratified by socio-economic inequalities, such as working in noisy environments, and due to some population sub-groups’ low take up of hearing screening programmes, including ethnic minorities. We were asked to identify risk factors for hearing loss and to describe how they are related to socio-economic inequalities. This could help with more effectively targeted hearing screening programmes.

Status: Complete

Background: In the UK, 12 million adults live with hearing loss greater than 25 dBHL, or one in five adults. This includes more than 40% of people over 50 years old, rising to more than 70 percent over the age of 70. Hearing loss is often associated with socio-economic inequalities, including more limited employment opportunities and social isolation. Furthermore, risk factors for hearing loss are stratified by socio-economic inequalities, such as working in noisy environments and smoking, and due to some population sub-groups’ low take up of hearing screening programmes, such as ethnic minorities. Improving the identification of groups at risk of hearing loss could lead to more effectively targeted screening programmes, and alleviate harms which are associated with socio-economic inequalities.

Aims of our project: We were asked to identify risk factors for hearing loss and to describe how they are related to socio-economic inequalities. To this end, our project included the following two objectives:

1. To create an annotated bibliography of systematic reviews which evaluate potential risk factors for hearing loss.
2. To describe how the identified risk factors within individual systematic reviews are related to socio-economic inequalities wherever relevant data are reported.

What did we do? We carried out a systematic search for systematic reviews on risk factors for hearing loss and presented the findings as an annotated bibliography. This involved searching a selection of bibliographic databases for relevant systematic reviews, and using supplementary search methods including checking the reference lists of relevant systematic reviews, and searching topically relevant websites. Identified records were independently screened by two reviewers using pre-defined inclusion criteria. This included a five-year historical date limit (2018-to date of search, 2022). Full-texts of relevant records were sought and screened in the same way.

We used a bespoke data-extraction form to extract relevant data on risk factors for hearing loss and socio-economic inequalities from the included systematic reviews. The PROGRESS-Plus checklist was used to identify socio-economic inequalities. Risk factors for hearing loss were categorised as physiological, behavioural, demographic or environmental. Key characteristics of relevant systematic reviews were tabulated. In addition, we produced an annotated list of systematic reviews organised by type of risk factor, including a brief summary of socio-economic inequalities reported in each systematic review where relevant. Some types of systematic review, including scoping reviews, were listed but not annotated, as their findings were not synthesised.

What did we find? We identified 64 systematic reviews (including scoping reviews) which evaluated potential risk factors for hearing loss published 2018 to date of search. Of these, 50 were included in the annotated list. This included 35 systematic reviews relating to physiological risk factors, including four which addressed socio-economic inequalities. Two systematic reviews considered behavioural risk factors, including one which addressed socio-economic inequalities. Six systematic reviews considered demographic risk factors, including five which addressed socio-economic inequalities. Seven systematic reviews considered environmental risk factors, including three which addressed socio-economic inequalities.

Overall, a minority of systematic reviews addressed factors associated with socio-economic inequalities. The most commonly addressed socio-economic inequality was gender (n=8 reviews), followed by occupation (n=4 reviews) and personal characteristics, mainly age (n=3 reviews).

Plans for sharing our findings: The final report is available on the University of Exeter Open Repository. We have also written a follow up paper which addresses the finding that only a minority of systematic reviews reported data relating to socio-economic inequalities. Given that the systematic reviews were published in the last five years, we found this finding surprising in view of recent efforts to encourage more reporting of socio-economic inequalities, such as the PRISMA-Equity statement. Our follow up paper has involved retrieving the primary studies included in a sub-sample of the most recently published systematic reviews, and assessing whether more data associated with socio-economic inequalities was reported in the primary studies than was subsequently reported in the systematic reviews.

Status: Complete

Background
Key stakeholders, including bereaved families and public figures, are calling for a process that investigates historically unresolved cases of suspected National Health Service (NHS) care failures, going back as far as 20 years or more. Consequently, the Department of Health and Social Care (DHSC) is keen to understand options for a proportionate, time-limited, mechanism to address those cases where legitimate questions or grievances remain, and it is in the public interest to do so.

Creating a system to address unresolved historical patient safety cases in the NHS is a complex issue.  These cases have often been subject to multiple reviews, but families feel that justice has not yet been achieved and remain traumatised and angry. Ministers have considered these calls to “establish a process that addresses unresolved cases, aimed at providing truth, justice and reconciliation, to address the concerns of patients, families and staff affected”.  They have concluded that, rather than establish a process or separate inquiry, the need to investigate such cases should be considered on a case-by-case basis and that the DHSC should commission a review to understand and how to address this issue from the perspective of achieving resolution and/or reconciliation for individuals and/or their families who have experienced a medical adverse event. This gives rise to the following policy questions:

• What are the issues for the health system to consider on how to respond on a case-by-case basis to historical patient safety cases?
• How can the way the health system currently supports and responds to bereaved families, particularly those whose cases are historic (non-recent), be improved?

To address these questions, we first need to understand how the current investigation process is experienced and the features that seem to lead to perceptions of “truth, justice and/or reconciliation” among those affected.

Research Questions:

1. What aspects of the processes and outcomes of redress and reconciliation following a life changing event lead the individual and/or family to feel that they were/were not treated fairly and appropriately?  
2. How do these perceptions vary over time following the initial event?

What we did
We conducted a systematic review of qualitative evidence to improve understanding of the processes and outcomes of redress and reconciliation following a life-changing event from the perspectives of individuals experiencing the event and their families. This is with a view to developing a framework or typology to help the Department of Health and Social Care identify historical patient cases for which management has been perceived to be procedurally unjust and for which some further intervention might be indicated.

Our review protocol was prospectively registered on PROSPERO. The methods used to conduct and report the findings of this review were consistent with the best practice approach for the conduct of systematic reviews and reporting of qualitative evidence synthesis.

We sought primary studies about individuals who have experienced a life-changing event and/or family or carers seeking justice on behalf of the person who experienced the event regarding their experiences and/or views of redress and reconciliation processes following this event. Studies were conducted in high-income countries and the redress process occurred within health/social care systems, child protection or sudden death investigations, homicide reviews or any other service or professional context identified by our searches where findings could provide useful insights for the health care context. No limits to the age of participants or date of publication were set.

Potentially relevant studies were found through searching bibliographic databases with search terms derived from relevant journal articles identified in our scoping searches. This search strategy was supplemented with forward citation searches, backwards citation chasing and targeted bibliographic database searches. To identify grey literature, we searched Google Scholar and topically relevant websites.

We appraised the quality of all studies prioritised for inclusion in the framework synthesis using the Wallace Checklist (2004). Studies were prioritised on the basis of their relevance to the health field. A sample of studies from outside of the health field were included in the synthesis if they provided data to support weaker subthemes.

We used NVivio software to synthesise the prioritised studies using a ‘Best-Fit’ framework synthesis approach based on the work of Daniels and Sabin (1997;1998; 2000), which highlight key aspects of a procedurally fair redress-reconciliation process. This framework was revised in a series of stages, using a process of iterative coding to ensure the final themes and subthemes best represented the extracted data.

We worked alongside a variety of stakeholders and advisors to ensure our findings reflect the needs of individuals who will use them, including representatives from the DHSC and two individuals with lived experience of medically life-changing events.

What did we find?

Overview
Fifty-three studies (61 papers) met the criteria for inclusion in this review. The types of life-changing event included in these papers included medical(n=31), homicide(n=5), work-related death(n=4), suicide(n=3), missing person (n=1), death in police custody/following contact with police(n=3) and child sexual abuse (CSA)(n=6).

Forty-one studies (47 papers) were included in the synthesis. None of these studies reported experiences of individuals who were still actively seeking justice following a non-recent, or “historical”, medical event. All of the studies representing the views of individuals seeking redress and reconciliation following a medically life-changing event were included in the synthesis. Other life-changing events represented within the synthesis included homicide (n=3), CSA (n=2), employment/work-related death (n=2), death in custody (n=1) and suicide (n=2). The majority of these studies scored positively on at least 8 of the 14 items on the Wallace checklist (range 2 to 13).

Main findings
Four themes were identified by the framework synthesis; 1) Transparency, 2) Person-centred, 3) Trustworthy and 4) Restorative justice.

The three themes ‘Transparency’, ‘Person-centred’ and ‘Trustworthy’ represent the procedural elements of redress-reconciliation which should be established to support a fair and objective process. The elements within these three themes are interdependent with each another, with each element influencing others within the redress-reconciliation process. For example, it is likely that if the process is conducted using a person-centred approach that this will increase the transparency and trustworthiness of the process.

If the redress-reconciliation process is conducted in a way which is consistent with the procedural elements identified by this synthesis, it may support the development of a supportive, empathic relationship between justice-seekers and individuals seen as responsible for the harm. This relationship may support those seeking redress and reconciliation to develop a coherent narrative about the trauma they have lived. This presents the opportunity for justice-seekers to express their emotions whilst telling their own story and receive acknowledgement for the hurt they have experienced. During this process, those seeking redress and reconciliation can be supported to take part in action which gives meaning to their loss. The combination of experience arising from a humanising process and the opportunity to develop a cathartic narrative and participate in meaningful action provides the foundation for the final theme, ‘Restorative justice’ which encapsulates how a fair process feels to those who have experienced a life-changing event.

It is within the context of the humanising and cathartic relationship between these stakeholders that the procedural elements of the redress and reconciliation process can be worked through, the harm and the impact on the individual can be explored, meaningful outcomes agreed upon and the emotional impact diffused, as people accept what has happened and learn how to incorporate the consequences of the event into their lives going forward. Thus, we propose that a fair process is dependent on both its procedural elements and the quality of the relationship developed between the different stakeholders. The latter has important implications for how those seeking redress reconciliations are made to feel, the extent to which they feel heard, and the degree to which their experiences can inform the process. This in turn can influence how fair they perceive the redress and reconciliation process and its outcomes to be.

We then considered how the key elements identified by the framework synthesis could be applied retrospectively to appraise if those seeking redress and reconciliation following a historical medical life-changing event have experienced a fair process. Thirteen elements of a fair redress and reconciliation process which could be applied to historical life-changing events were identified:

1. Opportunity to develop a comprehensive account of the life-changing event and redress-reconciliation process
2. Key information made available
3. Joint reflection on systemic factors which may have influenced the redress-reconciliation process
4. Assessment of needs and provision of ongoing support
5. An apology
6. Identification and implementation of points of learning
7. Achievement of other meaningful outcomes
8. Access to a reasonable and consistent process
9. Mechanisms in place to support the challenge of institutional accounts and/or decisions made
10. Opportunity for objective oversight or input
11. Opportunity to meet those perceived to be responsible for harm
12. Validation of experiences
13. Meaningful action for those who have experienced harm

What are the implications?

The features of a fair redress and reconciliation process support professionals involved with the investigation/inquest system to establish if those seeking redress-reconciliation following both a recent or historical medically life-changing event have experienced a fair process, or not.

Our findings may help patients and/or their families who are seeking redress-reconciliation know what to expect in terms of a fair process and could be used to help them articulate their needs at different stages throughout their journey.

It would be useful to establish to what extent the findings of this review reflect the experiences and needs of patients and families seeking redress and reconciliation following a historical medical event. This could be achieved through sharing the findings of this review with a greater number of individuals who have experienced medical harm, or other individuals, groups and organisations who represent them. Alternatively, a separate work of qualitative primary research could be commissioned to explore the experiences and needs of this group, with particular emphasis on their reflections on the need for a clear rationale for decisions made and their views on the resources available to support them to challenge findings/processes or resolve disputes.

Once work has been completed to validate the findings of this review, primary research to evaluate the extent to which existing structures and processes utilised within the NHS to promote redress-reconciliation reflect the components of the fair process as outlined within this report could be beneficial. This would provide insight into whether the processes currently being used are perceived as fair, with a view to reducing the number of people whose needs remain unmet for prolonged periods of time.

This review and any subsequent primary research have the potential for identifying areas in current practice which are not meeting the needs of people seeking redress and reconciliation and where changes need to be made. Some of these changes may initially be challenging to incorporate into the procedure-based systems used within healthcare settings and by other organisations supporting the redress-reconciliation process. Thus, further research regarding the most effective way to implement any proposed changes may be beneficial.

To see the protocol for this review, please click here.

Please click here to see the final report. We have also produced a Briefing paper and Illustration.

The aging UK population accompanied by the removal of default retirement age and increased prevalence of chronic conditions means there is an increased demand for workforce based support to enable individuals to continue their productive working lives for as long as they choose.  Occupational Health (OH) services have been identified as being key to ensuring that workplaces meet the physical and mental health needs of their employees.  Understanding the relative effectiveness of OH delivered interventions on return-to work outcomes, including intervention content and delivery mechanisms, will help inform the needs of those commissioning future OH services.  Whilst there is an abundance of systematic review evidence which seeks to evaluate single and multi-component OH interventions which aim to improve work and employment based outcomes, it is difficult to identify which aspects of the content and/or delivery of these interventions may be associated with success. In February 2021, we were asked to review the effectiveness and cost-effectiveness systematic review evidence that evaluates multi-disciplinary OH interventions aiming to improve work outcomes including return to work and reduced sickness absence.

Status: Complete

Background: In the UK, tens of millions of working days are lost due to work-related ill health every year, costing billions of pounds. Prior to the COVID-19 pandemic, around 8 million working-age people were registered disabled and about half of these were in employment.

The role of Occupational Health (OH) services is vital in helping workers to maintain employment when they encounter injury or illness. Part of this role is to advise on prevention of illness and injury at work, but a large part of it is to manage the recovery, rehabilitation and return to work (RTW) of sick-listed employees. The combination of an ageing population, increasing levels of chronic illness, mental health difficulties and disability, and the removal of the default retirement age, means that the demand for occupational health (OH) services is ever increasing.

OH providers traditionally rely on a clinical workforce to deliver these services, particularly doctors and nurses with OH qualifications. However, the increasing demand for OH services is unlikely to be met in future using this traditional model, as the number of OH-trained doctors and nurses in the UK is declining. Experts suggest multi-disciplinary models of OH delivery, including a more varied range of healthcare and non-healthcare professionals, can be highly effective. Moving to a more multidisciplinary workforce could also enable OH market capacity to significantly increase to meet new demand with less reliance on OH-trained doctors and nurses.

There is a therefore a pressing need to identify effective collaborative models of occupational health service delivery that involve a variety of healthcare and non-healthcare professionals.

Aims of our project: To review the effectiveness and cost-effectiveness systematic review evidence that evaluates multi-disciplinary OH interventions aiming to improve work outcomes including return to work and reduced sickness absence.

Research question:

1. What multi-disciplinary delivery models for OH services are effective, and for whom?
2. What are the characteristics of effective multi-disciplinary delivery models for OH?
3. Which multi-disciplinary models of OH service delivery are cost-effective?

What did we do?

We carried out systematic searches to identify, critically appraise, and narratively summarise systematic review evidence regarding:

1. The effectiveness of multi-disciplinary interventions intended to improve work outcomes following illness or injury, such as return to work and reduced sickness absence;
2. The cost-effectiveness of multi-disciplinary interventions intended to improve work outcomes following illness or injury.

We sought systematic reviews about adults (16 or over) in employment who have had absence or are absent from work for any medical reason and were receiving an intervention to get them back to work or help them retain work. Interventions needed to be multi-disciplinary (including professionals from different backgrounds in clinical and non-clinical professions) and designed to support employees and employers to manage health conditions in the workplace and/or to help employees with health conditions retain work and/or return to work following medical absence. Effectiveness needed to be measured in terms of return to work, work retention or measures of absence, or economic evaluation outcomes.

We worked alongside a variety of stakeholders and advisors to ensure our umbrella review reflects the needs of individuals who will use it. Stakeholders included commissioners and policy makers from DHSC and DWP, OH personnel and people with lived experience of accessing OH services themselves and/or supporting employees to access OH services.

What did we find?

We identified 89 systematic reviews that contained relevant interventions which involved a variety of professionals and the workplace, and which measured effectiveness in terms of RTW. Of these, we focused on the 24 where the population and intervention characteristics within the systematic reviews were the most relevant to our research questions. The 24 reviews were of varying quality, split evenly between High/Moderate quality and Low/Critically Low-quality ratings.

We mapped these 24 reviews in an evidence and gap map providing a visual representation of the evidence. Due to the heterogeneity of the interventions included within the systematic reviews, we were unable to structure the map according to the different types of intervention being evaluated. Instead, using the evidence and gap map, it is possible to view i) the quality and quantity of systematic review evidence for a given health condition, ii) how the review authors rated the effectiveness or cost-effectiveness of the interventions included. Furthermore, by navigating the evidence and gap map, one can see the relevant primary studies within each review.

Our umbrella review provides the first point of reference for interventions under the broad remit of multidisciplinary OH services involving the workplace, across any health condition leading to sick leave. However, the body of systematic review evidence about multidisciplinary models of OH services is highly heterogeneous in terms of intervention, health condition, size and quality and we were unable to draw conclusions about the relative effectiveness of different interventions across health conditions from this body of evidence.

Plans for sharing our findings: The final report is available on the University of Exeter Open Repository. We will share the report and Briefing Paper with the Occupational Health Teams who formed part of our project advisory group and other OH colleagues via social media. We have a published journal article which can be found here.

Please follow us on Twitter for updates.

Several recent reports have found that women do not feel listened to either by clinicians or at the system level when discussing health care concerns. Some women perceive that they are treated dismissively and that their symptoms are not taken seriously. Reports that have investigated how the health and social care system listens as a whole have also found that women have been disproportionately affected. In June 2021, we were asked to review the evidence on on primary care clinicians’ views on listening to and, more broadly, interacting with female patients, including with specific groups of female patients such as BAME, LGBTQ, older/younger and disabled women.

Status: Complete

Background: Evidence suggests that women do not feel listened to by primary care clinicians when discussing their health care concerns. In particular, women perceive that they are treated dismissively and that their symptoms are not taken seriously. What is less clear is why this occurs and in what circumstances, or indeed to what extent primary care clinicians perceive that there are problems around listening to women patients.

Aims of our project: We were asked to carry out a scoping review of evidence relating to primary care clinicians’ views on listening to and, more broadly, interacting with women patients. We focused on primary care clinicians’ views on listening to and interacting with women patients with gynaecological conditions or symptoms suggestive of gynaecological conditions, as background reading and survey data suggested that this was a particular area of concern for women patients.

Research questions:

1. What evidence is there about primary care clinicians’ perspectives on interacting with patients with gynaecological conditions or symptoms suggestive of gynaecological conditions?
2. What key themes have been raised about challenges of interacting with patients with gynaecological conditions or symptoms suggestive of gynaecological conditions?

What did we do? We developed and carried out searches for relevant studies using bibliographic databases and a variety of supplementary search methods. The search results were screened against pre-defined inclusion and exclusion criteria. In order to present and summarise the findings of the identified studies, we selected an ‘index paper’ to provide the initial framework against which findings of the other papers were coded. In addition, an interpretive discussion was written with a focus on how the findings might relate to the issues of listening to and communicating with women. Stakeholder engagement involved meetings with primary care clinicians to discuss their perspectives on interacting with women patients with gynaecological conditions or symptoms suggestive of gynaecological conditions.  

What did we find? Twenty-three papers, from 18 unique studies, were included in the qualitative scoping review. These covered clinicians’ experiences with diagnosing and managing endometriosis, menopause, menorrhagia, polycystic ovary syndrome, chronic pelvic pain, infertility disease, menstrual disorders and premenstrual symptoms. Issues relating to listening to and interacting with women patients with gynaecological conditions or symptoms suggestive of gynaecological conditions were organised under four thematic ‘levels’:

• the individual clinician;
• structural and organisational factors;
• community and external factors; and
• factors specific to gynaecological conditions and symptoms.

Plans for sharing our findings: The final report is available on the University of Exeter Open Repository. We have also produced a briefing paper and published a peer reviewed journal article in BJGPOpen.

Please visit our blog and follow us on Twitter for updates.

Evidence suggests that both the prescribing of statins and the taking of prescribed statins are not at optimal levels.  There is also evidence that many patients take drugs that cause dependency beyond the short periods for which they are licensed.  Furthermore, addiction to DCD is a priority area for reform, with a required focus on prescribing (and de-prescribing) practices.  In order to achieve optimal prescribing, it is essential to first understand the factors influencing the prescription and taking of drugs throughout the patient pathway. Scoping of the literature in this area reveals an array of systematic reviews covering aspects of the overarching topic of interest.  Prior to conducting further research, there is a need to clarify the state of the evidence in the area.

In April 2020, we were asked to map the quantitative and qualitative systematic review evidence available to inform the optimal prescribing of statins, anti-hypertensives and drugs which can cause dependency (DCD) and the point at which this evidence could be used to inform decision making in the patient care pathway for each type of medication.

Status: Complete

Background: Evidence suggests the prescribing and taking of, or adherence to, certain types of medication is not at optimal levels. This review focused on two areas of challenge:

• the under-prescribing and poor adherence to medications to prevent cardiovascular disease (CVD), specifically statins and antihypertensives, and
• the over-prescribing of drugs that may cause dependency (DCD, which includes opioids, benzodiazepines, gabapentinoids and non-benzodiazepine hypnotics) and antidepressants.

Scoping of the evidence base revealed an abundance of relevant primary research and evidence syntheses.  

Aims of our project:  We, therefore, aimed to identify, categorise and map the existing systematic review evidence, identifying both abundant and scarce areas of research.

Research question: What is known about how to achieve optimal prescribing of statins, anti-hypertensives and drugs which may cause dependency from the perspectives of patients and their families, prescribers, policy makers and other relevant professionals within the health care system?

What did we do? Systematic reviews published since 2010 were sought from bibliographic databases, websites and author contact and included if they brought together quantitative and/or qualitative evidence on:

• The effectiveness or experiences of interventions intended to improve prescribing practices or patient adherence;
• The effectiveness or experiences of interventions intended to improve implementation of interventions intended to improve prescribing practices or patient adherence;
• Practitioner views or perceptions of making prescribing decisions;
• Guidelines intended to inform prescribing practise.

We worked with members of the public and clinical stakeholders to construct patient care pathways from the decision to access care through to the decision to maintain or discontinue medication.  Initially, the care pathways were based on NICE guidance for prescribing of relevant medication of interest (statins, anti-hypertensives, antidepressants), as well as NICE guidelines for optimal prescribing and shared decision making, but we also incorporated evidence from other publications and guidelines as well existing research which explored the patient experience of taking some of the medications of interest.  We used the care pathways to structure the evidence and gap map.

Systematic reviews which met our eligiblity criteria were organised within an evidence and gap map according to the medication of interest and the relevance to the patient care pathway.

For a more detailed description of our methods please see the protocol.

What did we find?

One hundred and thirty systematic reviews met the eligibility criteria for inclusion in the evidence-gap map.

The evidence and gap map highlights the available quantitative and qualitative systematic review evidence to inform the optimal prescribing of DCD, antidepressants, statins and antihypertensive medication. The map summarises key characteristics of these systematic reviews and identifies areas where no, or low-quality systematic reviews have been conducted. These gaps highlight areas which may benefit from further searches to identify if any primary research exists, which could be combined within further evidence synthesis. Consultation with policy and commissioning stakeholders is required to confirm in which areas further evidence syntheses or primary research could best inform government policy.

Below we provide links to two versions of the evidence and gap map which displays systematic review evidence which met the inclusion criteria for this review.  The first displays systematic reviews which met our inclusion criteria according to which part of the patient-care pathway they may inform regarding the prescription of drugs which may cause dependency or prevent cardiovascular disease. This pathway was informed by NICE guidelines on prescribing these medications, a qualitative evidence synthesis exploring patient experiences of taking medication and consultation with patients and members of the public with experience of taking one or more of the medications of interest: https://eppi.ioe.ac.uk/CMS/Portals/35/EGM%20University%20of%20Exeter%20July%202021.html

The second version of the evidence and gap map presents the included systematic reviews within a condensed version of this pathway, as requested by our government stakeholders:
https://eppi.ioe.ac.uk/CMS/Portals/35/EGM%20University%20of%20Exeter%20August%202021.html

Plans for sharing our findings:

The final report is available on the University of Exeter Open Respository and the Briefing Paper can be found here. We have a published journal article which can be found here with a further paper under peer review. Please follow us on Twitter for updates.