Understanding and improving healthcare quality and health outcomes for children and young people

The Nuffield Trust for Research and Policy Studies in Health Services (The Nuffield Trust) is an independent health research charity overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Nuffield Trust aim to improve the quality of health care that improves the health of people in the UK by providing evidence-based research and policy analysis and informing and generating debate. The Nuffield Trust undertakes work for the public good and within a research governance framework. These are the Nuffield Trust’s legitimate interests which provide a lawful basis for processing personal data under the General Data Protection Regulation (GDPR).

In everything the Nuffield Trust do, they strive to be:

• independent and free from vested interests;

• rigorous, robust and evidence-based in the work they undertake;

• relevant, supportive but also challenging when they need to be;

• open and engaging with all those they come into contact with;

• an organisation that makes a difference to the quality of policy-making and practice in the UK.

The Nuffield Trust has decided to embark on a programme of work focusing on Children and Young People (CYP). This programme is compatible with and supports the legitimate interests above. There are five main drivers behind why the Nuffield Trust thinks that this area is an important area of work that requires attention.

1. Despite long term improvements, recent changes to the UK’s and England’s trajectories and comparative positions internationally, in outcome and quality indicators, are giving cause for concern. There have also been increases in emergency (hospital) care use by CYP - including care for conditions where there is a reasonable expectation that they can be managed in the community

2. There has been a long term lack of policy focus on the majority of services for CYP , with renewed calls for making CYP health and healthcare a priority as it struggles for visibility against:

• other priorities within the NHS (e.g. tackling system wide pressures and finances)

• other age groups in all-age strategies (e.g. Five Year Forward View), which is particularly pertinent when you consider that when asked about the same thing, the views of CYP patients can differ from those of their parents/carers and of adult patients

• wider societal priorities (e.g. Brexit and security)

3. There is an impact of CYPs’ socioeconomic backgrounds on their hospital care use (including care for conditions where there’s a reasonable expectation that they can be managed in the community) and outcomes, with a widening in inequalities in some areas of CYP health, such as diabetes.

4. At a time when the levels of poverty in children are also concerning as:

• The levels of child poverty is high;

• There has been a deterioration in child poverty trends in recent years;

• With poor projections for the future child poverty levels;

- the proportion of children living in absolute poverty - the proportion of children living in relative poverty is projected to further increase

- even in working households, children living in absolute poverty is projected to increase over the same time period - inequalities in absolute poverty rates between the least and most deprived children will widen even further

5. Child health has changed – over the last 45 years mortality data show an epidemiological transition away from acute infectious illness towards chronic long-term conditions. But the way health care services are provided is still heavily hospital focused and reactive.

The programme aims to:

1. Help develop the evidence base on what the issues are in CYP health, healthcare services, health systems and the wider context for CYP outside of these when it impacts on CYP’s health and outcomes.

2. To help develop the evidence base on the means of addressing these issues by national policy and decisions makers, local policy and decisions makers in commissioners and providers of health and other services, and individual professionals working with CYP. This will have a particular focus on what healthcare services and systems can do, but will also address how the different parts of the system that CYP come into contact with can work together to improve outcomes.

3. To provide thought leadership on the linkage (area, provider and individual person level) and analysis of information in relation to CYP.

4. To help maintain a focus on research and policy to improve quality of care, health and wellbeing for CYP.

Through:

1. Summarising and pulling together evidence from published and grey literature (i.e. material that is produced for non-commercial purposes) as well as opinions from experts on Children and Young People.

2. Describing, where it has not been done before, what is happening in Children and Young People’s health, in their healthcare services and in the wider context for Children and Young People when it impacts on their health and other outcomes

3. Investigating key determinants of poor health, developmental and well-being outcomes among CYP in the UK, with a particular focus on poverty, inequalities, development and education, basic needs (e.g. housing and food), individual behaviours and health services.

4. Studying the potential impact and cost of different interventions to address these determinants, in order to inform policy and decision makers about the benefits and implications of action/inaction for CYP’s health and outcomes at a national and local level (including commissioners and providers of healthcare services and other services) and to help them understand how they can move towards higher value care, with higher quality, greater efficiency and coordination.

5. Scrutinising relevant policy developments and findings by others and to comment on their implications for CYP’s health and outcomes.

6. Generating networks of organisations and people relevant to shaping the direction of healthcare systems and services in relation to CYP’s health and outcomes.

Health services are one important determinant of CYP health outcomes and healthcare activity data from Hospital Episode Statistics (HES), such as emergency department attendances, admissions and re-admissions, are important (though imperfect) proxies for health outcomes. Previous work undertaken by the Nuffield Trust through the use of HES data has shown the importance of Local Authority (LA) variation and inequalities in relation to CYP health outcomes. The Nuffield Trust need to continue to deepen and extend this work further to look at interventions and policy implications.

This Agreement permits the Nuffield Trust to use the data for the purposes of projects undertaken within the CYP programme which meet the above description and which are conceived, planned, approved and initiated through the following process.

1. Projects intended to meet the programme’s aims will be conceived and planned through an iterative process involving the Programme Director and Programme Lead with appropriate input from the Data Protection Officer (DPO). The Programme Director and Programme Lead will ensure that:

• Projects have a clearly defined objectives and operational plans;

• The aims of projects align with at least one of the programme’s aims (as stated above) – all projects must clearly and logically fall within the scope of having one or more of the 4 aims listed and achieving those aims through one or more of the 6 methods listed above;

• In each case, the use of the HES data is necessary and proportionate to the purpose of the project and that the minimum amount of data necessary is used – this will include consideration of the necessity for use of each individual HES dataset; the number of years of data; the sizes of any cohorts or control cohorts derived from the data, and the inclusion and exclusion criteria (such as presence of specific diagnostic or procedure codes);

• Appropriate safeguards are in place to protect confidentiality; minimise risks of re-identification and use of excessive data beyond necessity

A Data Protection Impact Assessment (DPIA) is completed at strategic level and covers all associated projects. A Legitimate Interest Assessment (LIA) will be completed internally for each research project and signed off by the Data Protection Officer (DPO).

2. A ‘project management template’ will be completed and submitted to the Nuffield Trust Project Planning Committee (PPC). This excel template serves a wider purpose than just planning and remains valid throughout a project’s life, serving as the central control document in the management and delivery of the project. The PPC is chaired by the Director of Communications and consisting of the chief Executive, Director of Research, Director of Policy, Senior Fellow, Senior Policy Analyst and other representatives from Research, Policy and Communications. It provides a forum for the discussion, in depth and expert assessment and approval of project ideas, drawing on senior level expertise and knowledge across the Trust.

The committee is responsible for receiving assurance that all projects:

• Align to the strategic aims of the Trust;

• Are methodologically sound; and

• Draw fully on the expertise within the Trust including making connections to other related work.

The Committee will approve or recommend the approval of projects in line with the internally approved schedule of management authority and responsibility.

3. The individual or team within Nuffield Trust which will carry out the project will define and be bound by an operational plan detailing what data is permitted for use in the project and how it shall be processed.

For the purpose of illustration, the following are examples of projects under the CYP programme which have already been approved by the PPC:

• Investigating variation to help understand the rise in emergency admissions for the under 5s. Following on from the Nuffield Trust’s previous report ‘Emergency hospital care for children and young people’, which found that among CYP (0-24 years), infants (under 1s) are the most likely to have an emergency admission and that over a ten-year period they experienced the largest increase in emergency admissions (23 per cent). Those aged between 1 and 4 had the next highest emergency admission rate and saw an 11 per cent increase over the period. The reasons for this increase have been speculated upon but no evidence provided. Looking at variation using HES data could help to further explain this rise in emergency admissions and offer some achievable solutions.

• Advancing understanding of the causes of poor child health, developmental and well-being outcomes (with a particular focus on early years (conception - 5 years)) in the UK and inform strategies to improve these outcomes. Part of this project will be to describe the trends in child health outcomes (e.g. emergency admissions, readmissions), through the use of HES, and to try and get a better understanding of which population, community and service characteristics (e.g. by looking aggregate level – NHS trust and Local Authority (LA) - at different factors such as age, conditions and deprivation) are associated with better or worse child health outcomes. With further analysis on how they relate to different social determinants that are potentially amenable to interventions.

Though the data requirements per project will vary, for the purpose of the programme, the Nuffield Trust will utilise up to 15 years of HES (covering accident and emergency, admitted patient care and outpatients) from 2005/06 to 2020/21. This period of data will enable the programme to carry out longitudinal analysis looking at variations in hospital activity and CYP health outcomes. Following on from the Nuffield Trusts definition of CYP as being a person under the age of 25, data analysed will be limited to individuals who are 0-25 years old. The Nuffield Trust requires one year above the age of 24 to allow for a year follow up on outcomes such as readmissions after events that occurred while they were still under the age of 25.

The time frame for undertaking each project will vary according to project resource, extent of the research and data analysis required. This is always considered as part of the Project Planning Committee's review and approved based upon the detail of each individual project.

Some projects under the programme will be funded by the Nuffield Trust but funding is also being sought from other partners including the Nuffield Foundation, NIHR and the Health Foundation but may not be limited to these organisations. Funders will take both the forms of partners in collaborative working, as well as commissioners only. The Nuffield Trust will not be reliant on securing funding from external partners to complete this research. However, the Nuffield Trust will need to recognise the contribution of any external partner in their outputs.

The Nuffield Trust will always remain the sole Data Controller. However, where appropriate, they will draw on additional expertise in the subject matter from other organisations such as the Royal Colleges, universities, charities and other bodies who will contribute to the interpretation of the results, joining together experience from across the Healthcare sector. Results may be shared in aggregate form in accordance with the Nuffield Trust's Research Governance framework, with small numbers suppressed. The data accessed through this Agreement will be managed by the Nuffield Trust, and will not be shared any other third-parties.

The Nuffield Trust will submit an annual report to NHS Digital summarising the projects within the scope of this Agreement that are planned, in progress and completed at that time. Whenever this Data Sharing Agreement is extended and/or reviewed this section will be updated to reflect the latest outputs, expected benefits and any yielded benefits from this programme.

The Nuffield Trust has received the pseudonymised HES data from NHS Digital under a separate Data Sharing Agreement for separate purposes. Appropriately minimised subsets of the data (customised according to the necessary requirements of each individual project) will be accessed and processed by employees of the Nuffield Trust and only for the purposes described in this Agreement.

Processing personal data is necessary for the legitimate interests which are described in this Agreement. The data to which access is requested are proportionate and necessary to achieve those interests. The Nuffield Trust have completed a legitimate interest assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS Digital or after a defined period on completion of the project.

Whilst the nature of detailed analysis varies, the broad context of processing is in summary:-

1. The data is downloaded from NHS Digital and imported into SAS. The server is held on-site, and access is restricted to named individuals according to The Nuffield Trust's Information Security Management System (ISMS).

2. The data is held within separate folders on a dedicated research server.

3. Remote access to the database is permitted, but only through Citrix via secure token (so processing is still carried out on site), and with local printing and downloading disabled.

4. Only staff who have signed a confidentiality agreement and have received Information Governance training are permitted access.

5. All access to individual files is recorded, and a sample audited to investigate the existence of any adverse incidents, and ensure that appropriate access has been maintained.

6. Once held in SAS, the researcher will view the data and select a specific cohort for the individual study. Commonly, a process will initially take place to define the particular cohort of interest in terms of e.g. individual diagnostic codes or procedure codes. The researchers will use routinely available filter definitions where possible, but may amend these based on the nature of the study's group of interest. Depending on the research a similar control group may be established.

7. The individual researcher then analyses the data, before applying the relevant disclosure controls to any output. Software used will be SAS, R and stata; typically this will involve analysis on several outcome measures, risk adjustment and the construction of control groups. At all times, data remains on the Trust’s local IT systems, in accordance with our ISO27001 scope. The Nuffield Trust uses on premise system with licenced software for SAS. R is an open-source application. Additionally, the physical server where the Trust stores and performs analysis, does not have internet access as it is blocked at the perimeter.

8. Under this Agreement, record level data will not be linked to this dataset. Data may be combined with publicly available demographic or geographic data, for example in relation to local Trust performance.

9. Outputs are thus produced which consist of aggregate data (or indicator/statistical data) only.

In all such work, the Nuffield Trust analyse patterns of hospital activity and outcomes by area, by year, by condition or by provider, developing comparative analyses and where appropriate standardising for a range of episode level, or patient level variables. The analyses may follow the health and care of a well-defined cohort of individuals over a lengthy period of time. Data maybe combined through linkage with other record level data sets (e.g. with data from the Community Service Data Set (CSDS) to look at associations with activity and outcomes of health visitor reviews). Data may also be combined with publicly available aggregated demographic and geographic data (e.g. to look at associations with deprivation and outcomes). Such analyses require complex processing for fair comparisons and to capture activity for whole populations - something that only nationally collated data can provide.

The Nuffield Trust will not provide access to record level data for any third parties, even where these third parties are study partners. The use of this data will be limited to Nuffield Trust for the purpose outlined above only. Data published or provided to third parties will be limited to aggregated data, at area, organisational or cohort-level all subject to small number suppression in line with the HES Analysis Guide.

The Nuffield Trust shall ensure access to data disseminated by NHS Digital is strictly prohibited and must not be accessed by the Trusts IT Managed Services provider.

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).

The Nuffield Trust will produce summative findings (shared locally and nationally, including academic publications).

The Nuffield Trust will develop a communication strategy for the overall programme and each project in collaboration with relevant partners & end users, including stakeholder dissemination list; social media strategy; bespoke events; conference presentations; open-access journal articles; sharing findings with trade press, such as the Health Service Journal and National Health Executive.

The Nuffield Trust will use their extensive communications facilities & networks for dissemination (including professionals in the fields of media relations, public affairs, digital communications and event management), working with partner communications teams, to maximise the impact of findings.

The Trust will review and evaluate the impact of their communications activity and refine their approach for each new output.

All outputs will be aggregate with small number suppressed in line with the HES Analysis Guide.

Anticipated dates of known study reports are listed. All may also include presentational web material (for example slideshows and blog posts), in addition to presentations given in person at relevant research or policy conferences, etc.

1. Variations in emergency admissions for the under 5s.

- Report planned Summer/Autumn 2019

2. Advancing understanding of the causes of poor child health, developmental and well-being outcomes (with a particular focus on early years (conception - 5 years)).

- Initial findings are planned to be presented at West Midlands Combined Authority Children’s Summit in October/November 2018, which aims to bring national and regional expertise, knowledge and experience together to explore the potential and the challenges for children and young people in the West Midlands.

- Findings are planned to be presented at a conference jointly hosted by the Nuffield Trust, the Nuffield Foundation, Nuffield College Oxford and the IFS in 2nd half of 2019. The conference will look to link evidence on CYP in education, welfare, social welfare and health outcomes.

- Report planned Summer/Autumn 2019.

Since 2009 the Nuffield Trust's research studies, using NHS data, have been widely used to inform decision making and debate in health care. The Trust has held agreements with the NHS to receive patient datasets since. The Nuffield Trust publishes their reports on the Nuffield website and in peer reviewed journals where appropriate.

There are many examples of The Nuffield Trust's work being cited in parliamentary debates and select committees as well as used by national bodies including the Department of Health and NHS England, CQC and Monitor. Many of the projects have been funded by the Department of Health and NHS, and the Nuffield Trust work in partnership with NHS and other care organisations and with universities. The Nuffield Trust has also provided examples of their studies for NHS Digital to use as evidence to the health select committee.

The benefits of The Nuffield Trust's work are seen in terms of decisions made by healthcare commissioners and providers, when thinking about the types of services needed to deliver benefits to patients, as well as by policy makers.

Specifically for CYP there are lots of interventions being introduced in CYP health and healthcare but these are often not evidence based and usually evaluated for success as a before and after in single site studies. There are lots of concern about variations occurring between areas but it is not clear why this has happened and how it can be mitigated.

This programme of work will provide a rigorous evidence base around variation, its causes and the impact of interventions. In this way it will inform national policy and decisions makers, local policy and decisions makers in commissioners and providers of health and other services, and individual professionals working with CYP and will contribute to improved outcomes and improved efficiency of health services for CYP.

This programme will also will be looking to do area level linkage to other data sets such as housing, spend, poverty and quality and accessibility to other services e.g. education, health visiting. In addition the Nuffield Trust are currently in discussions with relevant people at NHS Digital about the potential of linking HES information with information with other data sets, such as the Community Service Data Set (CSDS). Any patient level linkage will be sought in a separate application at a later date. Findings from both of these will add to the evidence base about how hospital and other services can contribute to wider health outcomes and how the services can work together. Also, both of these types of analysis will provide examples of new ways to combine information and data sets together and how this can maximise the potential of the information they contain.

As part of realising these benefits the Nuffield Trust are engaging key stakeholders including the Royal College of Paediatrics and Child Health (RCPCH), Royal college of General Practitioners (RCGP), Royal college of Emergency Medicine (RCEM), Royal College of Psychiatrist (RCPSYCH), Nuffield Foundation and local teams in the West Midlands, Birmingham and London. As well as being audiences for the Nuffield Trust’s work with a means of enacting change, the Nuffield Trust hope that they also become champions of it, so that beyond their own communications strategy, they can promote the Nuffield Trust’s work to other relevant people/organisations for action.

By adding to the evidence base and making this available to national and local policy and decision makers and providers of CYP services it will improve national policies and local decision making regarding reconfiguration and service planning of services for CYP. It is difficult to quantify the impact the findings from this programme will have on individuals, healthcare services and other services at the moment. However, in a previous report looking at inequalities in emergency care use, the Nuffield Trust found if unplanned admissions among the whole population were brought down to the level of the least deprived, this would have led to a decrease of around 244,690 paediatric emergency hospital admissions in 2015/16, a potential saving of almost £245 million per year. This translates to a potential saving of £8.5 million for asthma, £3 million for diabetes and £3 million for epilepsy. Also implementation of better service reconfiguration can reduce demand for hospital care, like the Connecting Care for Children Programme at Imperial College Healthcare NHS Trust where a change in the delivery model for outpatient care can substantially reduce the number of new referrals by GPs (39% avoided) and move a large proportion (42%) of appointments out of the hospital, with better CYP and family experiences.

Yielded Benefits is not a requirement for new applications.