ABSTRACT
Background There is a lack of evidence about the effectiveness of the national clinical outcome review programmes in England.
Methods We undertook a scoping review of the published literature for evidence of the impact of any of the current programmes or their predecessors, and asked programme leads to share examples of the impact of their work. Data were thematically analysed.
Findings Evidence about impact related to clinicians' awareness and practice, structural aspects of healthcare, processes of care and patient outcomes.
Conclusions The national clinical outcome review programmes appear to have had significant impact, but none are funded to assess the outcome and impact of the recommendations they make or to deliver a programme of change. There is no structured and systematic way in which the findings and recommendations of each programme are taken forward, nor in which the findings from across programmes are collated and considered.
Background
Mortality reviews afford the opportunity to examine the circumstances leading to the death of a person. Mortality and morbidity (MM) meetings have, for a long time, offered the opportunity for medical staff to review and learn from medical error, adverse events and in-hospital deaths with a view to changing practice as needed. Although common in medical services worldwide, the format and effectiveness of such meetings varies considerably.1,2 MM meetings often lack the key characteristics needed to learn from medical and surgical incidents and improve patient safety: the ability to draw on the input of all staff involved in the incident; use of a structured framework to investigate the underlying contributing factors; and assign responsibility for management and follow up of recommendations.3 A recent systematic review concluded that peer-reviewed evidence of patient-centred outcomes as a result of the MM process is extremely limited.4
Concerns about the objectivity of those attending MM meetings and the heterogeneity of assessment between primary local review and external panel review have led to the development of more systematic, standardised mortality review processes by multidisciplinary teams.5–7 These are more likely than MM meetings to consider broader concerns such as interagency working, communication and systems-based problems and to be more accountable for taking corrective action should adverse events arise.8,9 The strength of national mortality reviews is the ability to review deaths, both individually and as aggregated data. Aggregated data allow identification of broader patterns, repeated errors, and trends that may not otherwise be identified at local level and, with appropriate policy changes and interventions, have the potential to lead to more effective improvements in outcomes.10
National clinical outcome review programmes in England
The shift to national surveillance and response that informs the wider health and care system has been made in the UK through confidential enquiries, now known as the national clinical outcome review programmes.11
Broadly speaking, the key objectives of the clinical outcome review programmes are to improve the overall quality of care by identifying potentially avoidable factors that result in poor outcomes and making recommendations for prevention. Core components of successful programmes include strong government commitment and funding; a professional requirement to participate; adequate legal frameworks for the identification and notification of relevant cases; a ‘no shame, no blame’ culture; systematic processes in place for identifying remediable actions and publishing and disseminating reports; and a good working relationship with, but clear independence from, relevant government departments to ensure implementation of national recommendations.12
Over a decade ago, Sidebotham et al suggested there was a need for research into the outcomes of child death reviews, a suggestion echoed by Angelow and Black, who argued that although clinicians appear to have a strong belief in the value of clinical outcome review programmes, there was a lack of evidence of the impact of recommendations emanating from them.13,14 In this paper we provide evidence gathered from each of the national clinical outcome review programmes in England and a scoping review of the literature to identify and report on the impact of the current national clinical outcome review programmes in England.
Methods
In 2018, we approached the lead of each of the national clinical outcome review programmes in England to share examples of the impact of their work. In addition, we undertook a scoping review of the published literature for evidence of the impact of any of the current programmes or their predecessors, including confidential enquiries. Databases searched included Medline, CINAHL and PsychINFO. The search was conducted in 2018 and drew on evidence of impact between 2000 and 2018. Data was thematically analysed, the focus being the uptake of recommendations and the impact of this on the care received by specific populations.
Findings
Table 1 outlines the national clinical outcome review programmes included in the study. All are currently operating in England, apart from the National Mortality Case Record Review programme which finished in June 2019.
The national clinical outcome review programmes in England
Evidence of the impact of the programmes is presented below in relation to clinicians' awareness and practice; structural aspects of healthcare; processes of care; and patient outcomes.
Clinicians' awareness and practice
The impact of the national clinical outcome review programmes on clinicians' awareness and practice was highlighted by the Confidential Inquiry into deaths of people with learning disabilities (CIPOLD) from 2010–2012.15 A ‘ripple effect’ of the impact of being involved with CIPOLD was reported, with changes in professionals' knowledge, awareness and practice in relation to supporting people with learning disabilities; increased confidence in challenging what was felt to be inappropriate care; and supporting other practitioners to take a more person-centred, holistic approach. The review process was felt to have raised clinician's awareness about specialist learning disability services and sources of advice; to have reminded clinicians about relevant legislation in relation to the care of people with learning disabilities; and to have refreshed clinician's knowledge about risk management and safeguarding procedures.15
One of CIPOLD's recommendations was for the ongoing surveillance and review of deaths of people with learning disabilities and the English Learning Disabilities Mortality Review (LeDeR) programme was launched in 2015.16 Both CIPOLD and the LeDeR programme have highlighted specific examples of clinical care that was compromised by lack of awareness of the specific needs of people with learning disabilities (Case example 1).15 Hence, one of the early recommendations of the LeDeR programme was for the introduction of mandatory training for health and social care staff supporting people with learning disabilities to raise their awareness and improve practice. The government has since consulted widely on options for delivering this.17
Case example 1. Clinical care compromised by lack of awareness of the specific needs of people with learning disabilities15
The most recently established clinical outcome review programme is the Child Death Mortality Database. One of the immediate effects of its implementation has been the identification of gaps in the national process for reviewing deaths of children and recognition of the limited (or sometimes very poor) communication with bereaved families in some areas. Work has already begun to help develop and implement ways of improving these aspects of care.
Structural aspects of healthcare
Structural aspects of healthcare include those such as staffing levels, the availability and organisation of facilities, and the local introduction of guidelines. One example of the impact of a national clinical outcome review programme on structural aspects of healthcare is provided by the National Confidential Enquiry into Patient Outcome and Death review of trauma care.18 The study was established because of concerns that the quality of hospital care provided to trauma victims was not of a consistently high standard across the UK and that some hospitals had insufficient experience in dealing with severe trauma (Case example 2).18
Case example 2. Clinical example of the quality of hospital care provided to a trauma victim18
The Trauma: Who cares? study recommended significant changes to the structural delivery of trauma care with the need for designated major trauma centres and a verification process to quality assure the delivery of trauma care.18 Following the publication of the report, a national clinical director was appointed to embed the recommendations and the National Audit Office recommended the development of regional trauma networks in England. The first major trauma centre opened in England in 2012 and there are now 27 in England. All operate within local trauma networks, ensuring that patients are treated at the most appropriate place for their injuries, but then return closer to home for ongoing care when appropriate. A recent report suggests that since the creation of major trauma centres, the lives of 1,600 patients with severe injuries have been saved.19
The Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK) national programme of maternal mortality and morbidity surveillance and confidential enquiries has led to major structural changes in care for pregnant women at higher risk. The work has shown that two-thirds of the population attributable risk of maternal death is associated with medical comorbidities (Case example 3), frequently when concerning symptoms of medical disorders are attributed to pregnancy.20
Case example 3. Clinical example of symptoms of medical disorder being attributed to pregnancy20
Another key finding of the MBRRACE-UK national programme of maternal mortality and morbidity surveillance highlighted maternal suicide as an important cause of death in the year postpartum, emphasising the risks of deprescribing medication in pregnancy (Case example 4).20
Case example 4. Clinical example of maternal suicide20
These findings led to the introduction of new maternal medicine networks in England, announced in November 2017, the expansion of access to specialist perinatal mental health services proposed in NHS England's The NHS Long Term Plan, and new funding of £50 million for perinatal mental health services in Scotland.21–23
The new maternal medicine networks will ensure that there is a trained obstetric physician in each of 12 regions of England, with an associated network to ensure expert care for pregnant women with medical comorbidities. The additional perinatal mental health funding will ensure all pregnant and postpartum women are able to access specialist perinatal mental health services when required. Prevention of maternal deaths in association with medical and mental health comorbidities has the capacity to ensure achievement of the Department of Health and Social Care's ambition in England to reduce maternal deaths by 50% by 2025.
The delivery of care
A further way in which the impact of the national clinical outcome review programme is recognised is through the process or delivery of care. One exemplar of this is the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) review of acute kidney injury published in 2009.24 The NCEPOD study identified systematic failings in the recognition and management of acute kidney injury by clinicians (Case example 5), and a failure to recognise the complications of the condition.24
Case example 5. Clinical example of failing in the management of acute kidney injury24
The ‘landmark’ enquiry stimulated a range of initiatives highlighting acute kidney injury as a national priority area for action.25 It informed a referral from the Department of Health and Social Care to the National Institute for Health and Care Excellence (NICE) to develop its first guideline on acute kidney injury, subsequently published in 2013.26 In 2016, the NHS ‘Think Kidneys’ campaign programme for tackling acute kidney injury was introduced, with the aim of improving care for patients.27 In 2017 the Royal College of General Practitioners introduced the Acute Kidney Injury Toolkit as part of a quality improvement initiative.28 Part of the toolkit includes an interactive case-based e-learning module covering the recognition, assessment, and management of acute kidney injury in the community, with practical advice for clinicians about when to refer and how to follow-up patients after an episode of acute kidney injury.
Evidence of the effectiveness of improved delivery of care to people with acute kidney injury has subsequently been reported by a number of acute hospitals.25,29
Patient outcomes
The longest running of the confidential enquiries is that of the UK Confidential Enquiry into Maternal Deaths, which was started more than 60 years ago. During this time, maternal mortality rates have fallen 10-fold.30 A large proportion of this reduction has been due to the implementation of recommendations from reviews of maternal deaths that have highlighted the importance of routine screening, blood pressure control and fluid management in pregnancy (Case example 6).30 The impact of this has been a reduction in deaths from hypertensive disorders of pregnancy to fewer than one in every million women giving birth in the UK.20 Overall, the past 60 years have seen a dramatic reduction in the maternal mortality rate, such that maternal deaths are now very rare.30
Case example 6. Clinical example of missed opportunities for intervention30
The National Mortality Case Record Review programme (2016–2019) retrospectively reviewed the quality of a deceased patient's care from hospital admission to death using a validated Structured Judgment Review (SJR) tool for case-note review. Although relatively new, clinicians have reported that having access to a validated, standardised methodology has given them the confidence to review the care delivered to adult acute patients in a robust way and use this as the basis for locally led quality improvement initiatives.31 As an example, reviews at one NHS foundation trust were estimated to have resulted in a reduction in the standardised mortality rate for deaths from acute cerebrovascular disease from 130 in 2016 to 114 the following year (Case example 7). The SJR tool has been adapted for use within mental health trusts and the ambulance service and it has successfully identified areas of good practice in addition to areas for improvement in patient care.32,33 Participation in such panel discussions has been recognised by the royal colleges as an important part of continuing professional development for clinical professionals.
Case example 7. Using a structured review tool to lead to improved patient outcomes
Patient outcomes have also improved as a result of the National Confidential Inquiry into Suicide and Safety in Mental Health (NCISH) which has collected in-depth information on suicides in the UK since 1996. The recommendation to remove all non-collapsible curtain rails and its adoption as an NHS ‘never event’ has been estimated to have resulted in a 60% fall in deaths by hanging in inpatient wards. NCISH demonstrated that mental health service implementation of their recommendations was associated with lower suicide rates than in non-implementing services (Case example 8).34,35 In 2018, Public Health England and NHS England announced a £25 million 3-year programme of local suicide prevention quality improvement work based on NCISH recommendations.
Case example 8. Report of inquest into death of a person in a hospital bathroom35
Discussion and conclusions
The national clinical outcome review programmes have evolved over time and appear to have had significant impact since their inception, including saving lives and resources, and generally improving the quality of care provided to patients. The in-depth nature of their work can add weight to and complement other audits or national data collections by getting to the detail of what happened and what should have happened in a more informed way, resulting in more targeted recommendations for improvement. For the work of reviewing deaths to be accepted as valid, the core pillars of independence, confidentiality and trust appear to be crucial.
What is apparent from this review of the impact of the clinical outcome review programmes is that, although individual reflection can result in local change quite quickly, it takes much longer to embed national recommendations and demonstrate change – several years in some cases. Thus, although some of the longest-standing clinical outcome review programmes can demonstrate considerable impact at national level, this is less likely to be the case for some of the newer programmes.
Each of the clinical outcome review programmes is contracted to deliver a process of information gathering only; none are currently funded to assess the outcome and impact of the recommendations they make or to deliver a programme of change. What happens to the recommendations made by each of the programmes is therefore dependent on political will or committed practitioners. There is no structured and systematic way in which the findings and recommendations of each programme are taken forward, nor in which the findings from across programmes are collated and considered. This appears to be a significant gap in their effectiveness.
In our view, there are several ways in which the clinical outcome review programmes could be strengthened. First is the need for a national mortality oversight body to streamline mortality review processes where needed, draw together the findings and recommendations across the mortality review programmes, prioritise recommendations, and oversee their implementation. Second is the need to draw on the expertise of implementation science to consider the complex systems into which recommendations are made and improve the effectiveness of the recommendations taken forward into service improvements. Third we need to carefully balance the desire to collect more information with the resources needed to effect change and measure the impact of this. Reviews of deaths in themselves may be helpful but should not be at the expense of actions taken to prevent other early deaths. There is a moral and ethical dimension to this. If programmes are funded purely to gather and share information, they need to be assured that identified deficiencies in care are going to be addressed.
Acknowledgements
We would like to acknowledge the role of the Healthcare Quality Improvement Partnership (HQIP). HQIP is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices, and holds the contract to commission, manage and develop the national clinical outcome review programmes. HQIP is funded by NHS England, the Welsh Government and in some cases other devolved administrations. For more information see www.hqip.org.uk/national-programmes.
- © Royal College of Physicians 2020. All rights reserved.
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