NHS Digital Data Release Register - reformatted

The Nuffield Trust For Research And Policy Studies In Health Services

Project 1 — DARS-NIC-384572-J7P6Y

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2016/12 — 2019/06.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Outpatients

Objectives:

The Nuffield Trust is an independent research group overseen by a board of Trustees including a number of senior NHS clinicians, managers and academics. The Nuffield Trust undertakes work for the public good and within a research governance framework. The purposes for receiving HES data falls into the following categories :- 1. Evaluations of the impact of innovations in health and social care on hospital utilisation In an effort to improve the quality of health care and reduce the financial pressure on the NHS, efforts are being made to deliver more care in community settings, with the aim of preventing unnecessary and expensive admissions to hospital. The Nuffield Trust is developing methods to evaluate how well these interventions perform. The projects are: • Evaluation of the Integrated Care ‘Pioneers’. These are models of care aimed at reducing the impact of boundaries between care providers. This work is in partnership with the DH Policy Innovation Research Unit based at the London School of Hygiene and Tropical Medicine. • Evaluation of new models of primary care. This is an evaluation of selected ‘scaled up’ GP practices, to explore development of new general practice organisations. • Evaluation of a local scheme to deliver improved care for complex cases – as part of the PM’s Challenge Fund in Barking, Havering and Redbridge (funded by PM’s Challenge Fund). Additional projects may be added to this list but will be subject to an amendment to this agreement being approved by NHS Digital. 2. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place. In these studies The Nuffield Trust are seeking to improve the NHS’s ability to identify and implement good practice in terms of efficient and effective health care for patients. The projects are: • A DH funded project to look at ways to identify people who suffered avoidable serious harm. This will test whether HES data can be used as a screening tool to identify cases for specific audit. This work will be undertaken in conjunction with the London School of Hygiene and Tropical Medicine and Imperial College London. • Patterns of urgent care use related to the development of ambulatory emergency medicine, a new approach being adopted in hospitals around the country. The Nuffield Trust will look at the impact on patterns of acute hospital use and long terms outcomes for patients. Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes). • An assessment of the impact of alcohol on hospital services. This study aims to evaluate whether alcohol is an increasing burden on acute hospital services, will attempt to identify geographical areas where hospital alcohol teams are working well and aims to share opportunities identified for improvement. UPDATED INFORMATION OCT 2016 : This project is now closed and no longer requires the processing data for this use (apart from auditing purposes). Additional projects may be added to this list but will be subject to an amendment to this agreement being approved by NHS Digital. 3. Research studies relating to the efficiency of health services and level of competition in the English NHS. The projects: • Descriptions of differential patterns of hospital use (admissions, lengths of stay, child health indicators) by area and provider. This work aims to identify good practice in the efficient use of hospital resources. 4. Linkage of HES data to linked datasets provided by NHS Digital A number of other projects require access to HES data, but also make use of a linked dataset such as HES-ONS. These are subject to separate applications to NHS Digital, but would not require a separate data release. Instead the applicant would make use of the data provided under this agreement. Such projects typically cover 10 years of HES data. 5. Linkage of HES data to HES ids provided by NHS Digital regarding a specific cohort. Such uses would again be subject to separate data agreements, since they would have a different legal basis and potentially involve patient consent. They would be considered separately under different applications but would not require a separate data release. 6. Informing the public debate about hospital use The Nuffield Trust regularly acts to improve the quality of public debate on use of hospital services by publishing responsive research, which helps focus the debate on evidence. Trigger for this work include a specific issue suddenly coming to national prominence, or an individual or organisation making an assertion which is easily tested using data already available. As an independent research organisation and registered charity, with independence from party politics overseen by the board of trustees, such interventions are carefully considered to ensure that an evidence-based statement may add value to the overall debate. They are not provided at the request of any individual organisation. 7. Evaluations of the impact of innovations in health and social care on hospital utilisation In an effort to improve the quality of health care and reduce the financial pressure on the NHS, efforts are being made to deliver more care in community settings, with the aim of preventing unnecessary and expensive admissions to hospital. The Nuffield Trust is developing methods to evaluate how well these interventions perform. The project involves an evaluation of Virtual Wards in Devon. This study aims to evaluate a multidisciplinary care management scheme which was delivered to individuals in their homes. This work is intended to follow up an earlier study funded by NIHR which was only able to capture the first hundred patients admitted to the Virtual Ward. Over subsequent years, six thousand individuals have been admitted to the scheme. These were chosen as they were judged to have a high risk of hospitalisation. Nuffield will test whether the post-Virtual Ward hospital admissions were low within this group, compared to a similar cohort of people from other parts of the country selected from HES. UPDATED INFORMATION OCT 2016: This project is now closed and no longer requires processing of the data for this use (apart from auditing purposes). 8. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place. In such studies The Nuffield Trust are seeking to improve the NHS’s ability to identify and implement good practice in terms of efficient and effective health care for patients. The project involves evaluating the implementation of Quality Standards in the London region, which were developed and introduced to reduce variability in and improve patient care. The study aims to: - investigate variation in outcomes and adherence to standards across London - determine if there is an association between degrees of standard implementation and outcomes - evaluate innovative outcome measures to investigate the impact of standards on patient care and for monitoring standard adherence UPDATED ADDITIONAL PROJECT information OCT 16 The following describes new projects the Nuffield Trust are requesting access to HES data for; 9. Research studies identifying models of medical generalism used in smaller hospitals and exploring their strengths and weaknesses in treating older and more complex patients from patient, professional and service perspectives. The rising numbers of older and more complex patients is considered to be one of the most pressing problems facing the NHS. Although they receive the most resource-intensive care, their problems are less likely to be accurately diagnosed and have more adverse outcomes than other age groups. The emerging consensus is that current models of hospital care, which are heavily based around specialists delivering disease-specific care, serve these patients poorly, as it is often fragmented and poorly co-ordinated. A revival of medical generalism has been suggested to provide better and more cost-effective care. The reality, however, is that there is a paucity of evidence on which to base new models of medical generalism. Smaller hospitals provide an ideal environment in which to investigate models of medical generalist care, as their patient population is older and more vulnerable, while their size creates constraints on their income, capacity and staffing. The overarching aim of this research, therefore, is to identify the models of medical generalism used in smaller hospitals and explore their strengths and weaknesses from patient, professional and service perspectives. More specifically, Nuffield Trust will be using HES data to create a classification of patients that might benefit from general medical care and, based on this classification, provide a descriptive analysis of the workloads of smaller hospitals. 10. Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data The number of unplanned emergency readmissions to hospital have often been cited as a marker of quality of hospital care. Indeed, in England, readmissions have been used to influence hospital reimbursements. A number of studies, however, have shown that readmissions are complex and can be linked with a range of factors other than preventable or avoidable harms. If the quality of care at hospital level and individual patient characteristics are not the sole drivers of readmission then the additional factors must lie in the way different health systems manage patients. One way to consider the impact of systemic differences in health systems is to use international comparisons as a form of a natural experiment to see if patterns of readmission are similar or different. Though such comparisons cannot definitely identify the reasons behind differences, they can prompt useful questions on the effects of different health systems. In this analysis Nuffield Trust want to test whether two different health systems demonstrate a fundamentally different pattern of hospital readmissions. Within any health system there are variations in readmissions rates between areas - the product of a host of patient and health system level factors influencing decisions and resource use. In order to understand the impacts of the broader health systems then we need to consider the overall distributions of readmissions and standardise – as far as possible – for differences at the patient level attributable to the underlying health problems. The aim will be to analyse HES data covering admissions to NHS hospitals for selected years and calculate overall readmission rates. In parallel we will calculate the equivalent readmission metrics using the Dutch national data for the same time period. Nuffield Trust will then test for statistically significant differences in readmission rates between the two countries, and quantify to what extent any differences can be explained by patient-level factors (e.g. age, deprivation, severity) and the extent to which any variation could be explained by differences in the two health systems. Nuffield Trust will also attempt to distinguish between potentially preventable readmissions and other reasons for readmissions, using the administrative data, and produce a comparison between the two systems.

Expected Benefits:

Over the past five years The Nuffield Trust’s research studies, using NHS data, have been widely used to inform decision making and debate in health care. The Nuffield Trust publishes their reports on the Nuffield website and in peer reviewed journals where appropriate. The Nuffield Trust list below recent reports of studies where they have made use of HES data; 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. The following provides benefits for each of the projects; 1. Evaluations of the impact of innovations in health and social care on hospital utilisation. The study of Integrated Care Models will inform health care providers, commissioners and policymakers of the impacts of new forms of integrated care emerging under the banner of national ‘Pioneer projects’. This is a piece of applied research funded by DH and with a very wide audience. Throughout the study, the Nuffield Trust will be engaging with the Pioneer sites themselves and with others interested in developing new models of care. This aligns with national policy goals to provide a better care experiences through integration of services. Over the past few years a range of new forms of GP organisations have emerged. These are seen as one solution to systemic problems facing primary care; however there is little empirical analysis of these new organisational forms. The Nuffield Trust’s study of new models of primary care will be looking at the impact of networks of practices in terms of the way they have changed patient care and service delivery. Such analysis will be critical to future NHS planning on how to organise primary care services. The results will be of key interest all those involved in general practice, primary care and the commissioning of out of hospital services. UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has presented preliminary results to members of the New Models of Primary Care Network at quarterly meetings. Improving access to primary has been a matter of concern at the highest levels of government. In 2013 the PM created a Challenge Fund to look at new models of care. As evaluation partners of Barking, Havering and Redbridge’s successful bid to adapt services in the local area, The Nuffield Trust’s work will give provide a judgement about how successful these schemes might be. This will directly impact on local commissioners, and have implications across the country. 2. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place. In all such studies The Nuffield Trust are seeking to improve the NHS’s ability to identify and implement good practice in terms of efficient and effective health care for patients. The Nuffield Trust’s work on serious avoidable harms has the possibility of contributing to safer care and better methods for future monitoring systems. Ambulatory emergency care (AEC) provides a model of care for patients who have urgent care needs, but do not necessarily warrant an acute hospital admission. Though a number of local evaluative studies have been undertaken there are no systematic analyses across a range of organisations providing AEC. Through analysing the impacts of these schemes we can identify which types are most successful in delivering better care for patients. These can serve as models of success for areas wishing to develop their own services. UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has presented findings at British Association of Ambulatory Emergency Care Annual National Conference 2015. This project is now closed andno longer requires processing data for this use (apart from auditing purposes). The Nuffield Trust’s study of alcohol aims to understand the burden on hospital services and to identify areas where preventative action is working well. This work will consider effectiveness of different models of service provision which will meet a specific recommendation for future work made by Public Health England following their survey of hospital alcohol teams. The findings will be of interest to Health and Wellbeing Boards and to local commissioners of alcohol services and aims to share learning of how the burden of alcohol to hospitals can be reduced. UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has – (1) Produced a paper "Alcohol-specific activity in hospitals in England" published on 22nd Dec 2015, along with blog "The sobering burden of alcohol on the NHS". (2) Submitted an academic paper to the BMC Public Health "The impact of alcohol care teams on emergency secondary care use following a diagnosis of alcoholic liver disease - a national difference-in-difference study." on 12/1/2016 . (3) Public Health England Conference abstract poster presentation "Hospital use before and after first recorded diagnosis of alcohol related liver disease in England: Opportunities for early intervention to reduce harm". This project is now closed and no longer requires processing data for this use (apart from auditing purposes). 3. Research studies relating to the efficiency of health services and level of competition in the English NHS. These pieces of work aim to identify good practice in the efficient use of hospital resources. The Nuffield Trust’s future modelling will be used (as their past modelling currently is) to inform public debate about health service provision and central planning assumptions about future needs. UPDATE OCT 2016: As part of realising the expected benefits the Nuffield Trust has, through the QualityWatch (http://www.qualitywatch.org.uk/) programme, produced a series of reports, carried out several activities and had the following impact. This includes – 1. Hospital admissions from care homes (29th January 2015). Subsequent to publication this was referenced in the evidence for NICE guidance: Transition between inpatient hospital settings and community or care home settings for adults with social care needs (November 2015) 2. Mental ill health and hospital use (14th October 2015). Nuffield Trust has presented the findings at the Public Health England Conference (September 2015) and at the International Conference of Integrated care (May 2016). Nuffield Trust has also had several contacts with local healthcare providers for guidance on how to apply the methods to carry out the same analysis locally. Whilst it is hard to draw causality, Nuffield have also been made aware of NHS England undertaking work to drive improvements in the quality of physical health care provided by mental health providers to service users with severe and enduring mental ill health and will be developing a national clinical audit to underpin this under the National Mental Health CQUIN scheme for 2016/17. 4. Linkage of HES data to linked datasets provided by HSCIC Individual benefits will be covered within separate applications 5. Linkage of HES data to HES IDs provided by HSCIC regarding a specific cohort Individual benefits will be covered within separate applications 6. Informing the public debate about hospital use The Nuffield Trust’s responsive analyses will improve the quality of public debate on hospital use by broadening the available evidence base, focusing the debate on evidence rather than assertion and potentially preventing poor policy decisions. This work is widely reported in the media and Nuffield regularly meet with senior policy-makers and leaders in the NHS to discuss thiswork. 7. Evaluation of Virtual Wards in Devon The evaluation of Virtual Wards fits within a suite of work the Nuffield are undertaking on community based alternatives to hospital care. An earlier study of ours (funded by NIHR) included a very early assessment of Devon’s virtual wards [1], but the number of people recruited was too small to make any robust assessment of whether the scheme had reduced future unplanned admissions. In the following years 6,000 primarily older people have been provided with care in a home based virtual ward. This cohort size should give us the power to detect significant differences, even where these are relatively small. The overall aim is to provide evidence to the health service on methods of care which help people to stay independent of hospital for longer. [1] Lewis GH, Georghiou T, Steventon A, Vaithianathan R, Chitnis X, Billings J, et al. Analysis of virtual wards: a multidisciplinary form of case management that integrates social and health care. Final report. NIHR Service Delivery and Organisation Programme; 2013. UPDATE OCT 2016: This project is now closed and no longer requires processing data for this use (apart from auditing purposes) 8. Evaluating the implementation of Quality Standards in the London region This work aims to assess the extent of the patient benefits delivered by the introduction of new quality standards and to evaluate a new set of outcome indicators that can be used to more accurately measure their benefits. Applying these standards has a potential direct impact on the quality of over a million care episodes a year – over 500,000 patients. Moreover the London standards will be incorporated into the national Keogh standards. As a consequence this work on standards and outcomes will be of relevance to every hospital in the NHS with prospects of being incorporated into national audit tools. Nuffield will be presenting the outcomes in peer-reviewed reports and using Nuffield's extensive network of contacts to target these towards key decision makers. This will be facilitated by the Trust’s communications team who are very experienced with this type of activity. There is also direct interest from NHS London who have expressed an interest in funding further pieces of work in this area. UPDATED ADDITIONAL PROJECTS OCT 2016 – new projects the Nuffield Trust are requesting access to HES data for. 9. Research studies identifying and evaluating models of medical generalism Three separate panels of experts, the Independent Commission for the Royal College of General Practitioners and the Health Foundation, The Royal College of Physicians of London’s (RCPL) Future Hospital Commission (FHC) and the General Medical Council’s Shape of Training review, have all recommended a revival in general medicine to better provide high-quality, cost-effective care. However, general medicine cannot be rapidly reintroduced, nor hospitals, let alone smaller ones, reconfigure services unless there is a clear understanding of patient need and how different models of current medical care meet these. With NHS England’s Viable Smaller Hospitals workstream of the New Models of Care programme already underway, there is an urgent need for clear and comprehensive evidence to guide future policy and service reconfiguration. This study has the potential to have a major impact at the national and international levels, as the debate so far around medical generalism has operated largely at an abstract level. This research will provide much needed evidence to ground the debate in the empirical and experiential realities of underlying patient need. It will provide a theoretically informed evidence base from which to take the debate forward. This will not only have relevance for unscheduled adult medical care, but could also be applied to other clinical areas, such as surgery and paediatrics. It also has relevance to larger hospitals, as well as informing much broader, international debates around matching medical workforce to growing patient need. This research should influence decision making around: • Ways of working in hospitals • The education of doctors at undergraduate and graduate level • The number and types of doctors required in the UK • Continuing professional development for physicians • Legislative and contractual arrangements for doctors • The future of smaller hospitals and their role in the wider healthcare system 10. Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data Despite the prominence of readmission rates in discourse around health service organisation, there are few empirical studies that compare the rates of readmission across different health systems. This analysis will provide a thorough comparison between readmission rates in England and the Netherlands, and also allow a deeper understanding of which readmissions are truly preventable and those that occur for other reasons. Readmissions due to complications are a burden for patients and account for high healthcare costs: this research will provide insight into the types of readmissions that should really be included in hospital-level indicators to get a valid representation of quality improvement potential. By way of further evidence as to the use made of HES, a non-exhaustive list of recent publication using HES data is provided below. All such articles are in the public domain, and many relate directly to current health practice or topics of interest, and have been commissioned by the NHS or the Department of Health. Nuffield Trust Research Group - Recent publications that have used HES (October 2014) • Holly Dorning and Martin Bardsley. Focus On Allied Health Professionals. Nuffield Trust September 2014. • Theo Georghiou and Martin Bardsley. Exploring the costs of end of life care. Nuffield Trust September 2014. • Ian Blunt, Martin Bardsley & Giovanni FM Strippoli. Predialysis hospital use and late referrals in incident dialysis patients in England: a retrospective cohort study. Nephrology Dialysis Transplantation. Nephrol. Dial. Transplant. (2014) doi: 10.1093/ndt/gfu284 • Steventon A, Bardsley M, Doll H, Tuckey E, Newman S. Effect of telehealth on glycaemic control: analysis of patients with type 2 diabetes in the Whole Systems Demonstrator cluster randomised trial. Submitted for publication. BMC Health Services Research. June 2014 • Steventon A, Bardsley M and Mays N. Effect of a telephonic alert system (Healthy Outlook) for patients with chronic obstructive pulmonary disease: cohort study with matched controls. Journal of Public Health Advance Access published July 10, 2014. pp. 1–9 doi:10.1093/pubmed/fdu042 • Blunt I, Bardsley M, Grove A, et al. Classifying emergency 30-day readmissions in England using routine hospital data 2004–2010: what is the scope for reduction? Emerg Med J Published Online First 26/3/14 doi:10.1136/emermed-2013-202531 • Lewis, G. H., Vaithianathan, R., Wright, L., Brice, M. R., Lovell, P., Rankin, S., & Bardsley, M. (2013, November 4). Integrating care for high-risk patients in England using the virtual ward model: lessons in the process of care integration from three case sites. International Journal of Integrated Care. Retrieved from http://www.ijic.org/index.php/ijic/article/view/URN%3ANBN%3ANL%3AUI%3A10-1-114754/2197 • Lewis GH, Georghiou T, Steventon A, Vaithianathan R, Chitnis X, Billings J, et al. Analysis of virtual wards: a multidisciplinary form of case management that integrates social and health care. Final report. NIHR Service Delivery and Organisation Programme; 2013. • Steventon A, Tunkel S, Blunt I and Bardsley M. Effect of telephone health coaching (Birmingham OwnHealth) on hospital use and associated costs: cohort study with matched controls. BMJ. 2013 Aug 6;347:f4585. doi: 10.1136/bmj.f4585. • Bardsley M, Doll H and Steventon A. Impact of telehealth on general practice contacts: findings from the whole systems demonstrator cluster randomised trial BMC Health Services Research 2013, 13:395 doi:10.1186/1472-6963-13-395 • Roberts A, Blunt I, Bardsley M. Focus On: Distance from home for emergency care. QualityWatch Report May 2014. Nuffield Trust/Health Foundation • Georghiou T, Cooke M, & Bardsley M. How Representative Are Patients Who Access the Marie Curie Nursing Service of the Population of People Who Die Each Year in England? BMJ Supportive & Palliative Care, 3(1), 134–134. doi:10.1136/bmjspcare-2013-000453b.27 • Natasha Curry, Matthew Harris, Laura Gunn, Yannis Pappas, Ian Blunt, Michael Soljak, Nikolaos Mastellos, Holly Holder, Judith Smith, Azeem Majeed, Agnieszka Ignatowicz, Felix Greaves, Athina Belsi, Nicola Costin-Davis, Jessica D Jones Nielsen, Geva Greenfield, Elizabeth Cecil, Susan Patterson, Josip Car, Martin Bardsley Integrated care pilot in north west London: a mixed methods evaluation. Int J Integr Care 2013; Jul–Sep, URN:NBN:NL:UI:10-1-114735 • Chitnis, X. , Georghiou, T., Steventon, A., & Bardsley, M. J. (2013). Effect of a home-based end-of-life nursing service on hospital use at the end of life and place of death: a study using administrative data and matched controls. BMJ Supportive & Palliative Care, 1–9. doi:10.1136/bmjspcare-2012-000424 • Bardsley M, Blunt I, Davies S, Dixon J. Is secondary preventive care improving? Observational study of 10 year trends in emergency admissions for conditions amenable to ambulatory care. BMJ Open 2013; :e002007. doi:10.1136/bmjopen-2012-002007 • Davies A, Chitnis X, Bardsley M. Hospital activity and cost incurred due to unregistered patients in England: considerations for current and new commissioners. J Public Health first published online December 19, 2012 doi:10.1093/pubmed/fds098 • Clarke A, Blunt I, Bardsley M. Analysis of emergency 30 day readmissions in England using routine hospital data 2004-20010.Is there scope for reduction. Presented the Society for Social Medicine Annual Scientific Meeting. Journal of Epidemiology and Community Health. September 2012 Supplement. Doi:10.1136/jech-2012-201753.117 • Billings J, Blunt I, Steventon A, Georghiou T, Lewis G, Bardsley M. Development of a predictive model to identify inpatients at risk of readmission within 30 days of discharge (PARR-30). BMJ Open. 2012;00:e001667. doi:10.1136/bmjopen-2012-001667. • Roland M, Lewis R, Steventon A, Adams J, Bardsley M, Brereton L, Chitnis X, Staetsky L, Tunkel S, Ling T. Case management for at-risk elderly patients in the English Integrated Care Pilots: observational study of staff and patient experience and secondary care utilisation. International Journal of Integrated Care – Volume 12, 24 July – URN:NBN:NL:UI:10-1-113731 / ijic2012-130 – http://www.ijic.org/ • Steventon A, Bardsley M, Billings J, Dixon J, Doll H, Hirani S, Cartwright M, Rixon L, Knapp M, Henderson C, Rogers A, Fitzpatrick R, Hendy J, Newman S. Effect of telehealth on use of secondary care and mortality: findings from the Whole System Demonstrator cluster randomised trial. BMJ 2012;344:e3874.

Outputs:

Anticipated dates of 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. Evaluations of the impact of innovations in health and social care on hospital utilisation • - Integrated Care Models (Pioneers).Interim report in 2016, with annual reports from 2016 to 2020 (final report in 2020). - New models of primary care • Interim report, September 2015. Final Nuffield Trust research reports will be available Autumn 2016. Update April 2016: Nuffield Trust publication due in June 2016 and planning a subsequent separate academic research paper - PM’s challenge fund in Barking, Havering and Redbridge • Interim report to local areas, June 2015. Final Nuffield Trust research report, peer review articles - summer 2016. 2. Research studies involving the surveillance of patterns in hospital admission and costs at area level in England, aimed at identifying areas where innovation in service delivery is taking place. - Avoidable harm project • Reports co published with LSHTM. Final report to NIHR available January 2017. Also peer review articles at this time. - Ambulatory emergency care project • Nuffield Trust preliminary report (evaluation of pilot sites) – spring 2015 and if successful we will agree a more comprehensive longer term evaluation proposal. UPDATED OCT 2016: This project is now closed andno longer require processing data for this use (apart from auditing purposes). - Assessment of the burden of alcohol on hospital services • Nuffield Trust report completed by summer 2015, with peer reviewed papers to be submitted also in summer 2015. UPDATED OCT 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes). 3. Research studies relating to the efficiency of health services and level of competition in the English NHS. - Descriptions of differential patterns of hospital use by area and provider. • Analysis of length of stay led to workshop in September 2014 (with Monitor), research report planned for winter 2014. Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes). Child health study, to report 2016/17. 4. Linkage of HES data to linked datasets provided by HSCIC Individual outputs will be covered within separate applications 5. Linkage of HES data to HES ids provided by HSCIC regarding a specific cohort Individual outputs will be covered within separate applications 6. Informing the public debate about hospital use The outputs of this work will be in the form of blogs, briefings, and/or presentation slideshows, posted on the Nuffield Trust website and made freely available to all. Due the responsive nature of the work, The Nuffield Trust are not able to provide prospective dates for these outputs 7. Evaluation of Virtual Wards in Devon Nuffield trust report to be published by end of 2015. UPDATE OCT 2016: This project is now closed and no longer requires processing data for this use (apart from auditing purposes). 8. Evaluating the implementation of Quality Standards in the London region • Nuffield Trust report to be published by mid-2016 The report will require quantitative analysis, the methods for which will be piloted in a Masters dissertation to be completed by the end of 2015. This work, which is overseen by a senior analyst, will lead to a peer reviewed publication to be submitted also in early 2016. The Nuffield Trust network will also be used to promote the findings amongst senior decision makers in the NHS and the Department of Health. UPDATED ADDITIONAL PROJECTS OCT 2016 – new projects the Nuffield Trust are requesting access to HES data for. 9. Research studies identifying and evaluating models of medical generalism Outputs in late 2017 will include a final report, an executive summary, and summary results for a lay audience. All will be made publically available on the Nuffield Trust website. Other planned mechanisms for dissemination include: the packaging and provision of on-going feedback to participating hospitals; workshops with user groups; face to face engagement with policy makers at national level; explicit knowledge transfer and exchange initiatives, such as working with networks such as the NHS Confederation. All data published/disseminated will be aggregated and no small numbers are anticipated but if they arise then they will be suppressed in line with HES analysis guidelines. At the same time abstracts will be submitted to key conferences, such as Future Hospital Programme of the RCPL, Quality and Safety in Health Care Forum, the NHS Confederation Conference, as well as NIHR events. 10. Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data Summary report published on Nuffield Trust website in winter 2016 and with an aim to publish in a reputable, peer reviewed journal by early 2017. The Nuffield Trust network will also be used to promote the findings amongst senior decision makers in the NHS and the Department of Health. All data published will be aggregated and no small numbers are anticipated but if they arise then they will be suppressed in line with HES analysis guidelines.

Processing:

The data requested and already disseminated will be accessed and processed by substantive employees of The Nuffield Trust and only for the purposes described in the application. Whilst the nature of detailed analysis in relation to each project varies, the broad context of processing is consistent. In summary :- - 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 security policy. - The data is held within separate folders within the server. - 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. - Only staff who have signed a confidentiality agreement and have received IG training are permitted access. - 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. - Once held in SAS, the researcher will view the data and select a specific cohort for each 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 each study’s group of interest. Depending on the research a similar control group may be established. - 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. - No record level data would be linked to this dataset, but it may be combined with publically available demographic or geographic data, for example in relation to local Trust performance - Outputs are thus produced which consist of aggregate data (or indicator/statistical data) only. As an example, for the assessment of the burden of alcohol on hospital services, The Nuffield Trust will look at national trends of alcohol related A&E attendances and inpatient admissions for alcohol related liver disease (ARLD) over the most recent decade. The Nuffield Trust will also identify a cohort of patients diagnosed with ARLD for the first time, and examine their prior and post diagnosis patterns of hospital use, in the context of a comparator group. Analyses will be undertaken at local authority level and will take into account provision of acute trust alcohol services. In all such work, The Nuffield Trust analyse patterns of hospital activity by area, by year, by condition or by provider, developing comparative analyses and standardising for a range of episode level, or patient level variables – such as age, the presence of a long terms condition, prior patterns of use. The analyses commonly follow the health and care of a well-defined cohort of individuals over a lengthy period of time (for example the alcohol study will follow for ten years, the child health study – part of the differential patterns of health – will evaluate a cohort throughout childhood). Such analyses require complex processing for fair comparisons and to capture activity for whole populations – something that only nationally collated data can provide. The datasets necessary for each of the studies are listed below. Where the start date is given as being earlier, OP data will be used from 2003/04 and AE data from 2007/08. *Study will require further years of data beyond those being requested in this application. : - Integrated Care Models (Pioneers). • APC, OP, AE 2004/05 to 2019/20* - New models of primary care • APC, OP, AE 2003/04 to 2015/16 - PM’s challenge fund in Barking, Havering and Redbridge • APC, OP, AE 2004/05 to 2015/16 - Avoidable harms project • APC, OP, AE 2003/04 to 2016/17* - Ambulatory emergency care project. (Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes)). • APC, OP, AE 2001/02 to 2015/16 - Assessment of the burden of alcohol on hospital services (Update May 2016: This project is now closed and we no longer require processing data for this use (apart from auditing purposes)). • APC, OP, AE 2001/02 to 2013/14 - Descriptions of differential patterns of hospital use by area and provider. • APC, OP, AE 1997/98 to 2015/16 For the study of Virtual Wards in Devon, the Nuffield Trust will use HES data from a small set of areas chosen as being similar to Devon (these areas are Somerset, Cornwall, Shropshire and Herefordshire). From these areas, the researchers will select a pseudo control group of individuals who shared characteristics with individuals who were admitted to the Virtual Ward scheme in Devon. These characteristics include age, sex, prior use of hospital services, and diagnostic history. The characteristics and hospital utilisation of the individuals admitted to Virtual Wards will be derived using a locally sourced pseudonymised data set (SUS). We will then compare future unplanned and other admissions to test for differences between the Devon Virtual Wards cohort and the pseudo control group. For the evaluation of the implementation of Quality Standards in the London region The Nuffield Trust will look at variation in outcomes by London hospital/trust by carrying out cross section analysis at different time points, analysing the changes in extent of variation over time, investigating variations in trends and looking at these in different patient groups. The datasets necessary for the new study is listed below. Where the start date is given as being earlier, OP data will be used from 2003/04 and AE data from 2007/08. - Evaluation of Virtual Wards in Devon. (UPDATED OCT 2016: This project is now closed and no longer require processing data for this use (apart from auditing purposes). • APC, OP, AE 2006/07 to 2014/15 - Evaluating the implementation of Quality Standards in the London region • APC, OP, AE 2005/06 to 2015/16 UPDATED ADDITIONAL PROJECT information OCT 2016 – new projects the Nuffield Trust are requesting access to HES data for. - Research studies identifying and evaluating models of medical generalism • APC, OP, AE 2010/11 to 2015/16 - Classifying readmissions and comparing readmission rates between the Netherlands and the UK based on national administrative data • APC 2013/14 to 2015/16 Additional note – third parties The Nuffield Trust will not provide access to for any third parties to access record level data, 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.


Project 2 — DARS-NIC-226261-M2T0Q

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive, and Sensitive

When: 2019/10 — 2020/01.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Community Services Data Set
  • Hospital Episode Statistics Outpatients
  • Emergency Care Data Set (ECDS)

Objectives:

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 aims to improve the quality of health care to improve the health of people in the UK by providing evidence-based research and policy analysis and informing and generating debate. It provides a trusted and respected voice at a time of unprecedented challenge to the NHS and social care system. Under the HRA’s GDPR Operational Guidance the Nuffield Trust therefore relies on Article 6 (1) (f) “processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject”. The Nuffield Trust’s legitimate interest is carrying out healthcare research in the wider public interest of improved healthcare outcomes for NHS patients. The Trust relies on Article 9 Condition 9(2) (j) (processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject) as the condition for processing “Special” categories of personal data. The Nuffield Trust has determined that no moral or ethical issues are raised by its processing of HES or other patient data sets (such as emergency or community care data). All data supplied is pseudonymised. All outputs contain only aggregate data, with small numbers suppressed to agreed thresholds in line with the HES (or appropriate) analysis guide. The Nuffield Trust focuses its activities on six priority areas: • Health & social care finance and reform • NHS Workforce • Older people and complex care • Quality of care • New models of health care delivery • Children and young people These priorities were set in 2015, with the exception of “Children and Young People” which was added in 2017, and are anticipated to remain valid until at least 2020. The work of the Trust is organised into a number of programmes which address these priorities. The programmes are broadly aligned to priorities as shown below, with a desire to develop a number of the programmes to cut across one or more of the strategic priorities to maximise reach and impact. For example, the Quality programme is relevant to both Quality of Care and Primary Care priorities, and the Workforce programme impacts on both Workforce and New Models of Care. Each programme has a sponsor at Director level, as well as a programme lead, who is typically a Senior Researcher or Senior Policy Fellow. The data from NHS Digital is vital to the Trust’s work because it is an essential source of information on patient activity and outcomes, which allows comparisons across different parts of the NHS and over time. The use within programmes and projects is outlined in more detail in the following sections. 5a.i. Rationale for strategic priorities and programmes Health & social care finance and reform: The NHS is introducing new models of care and a different way to work with councils through Sustainability and Transformation Partnerships. All of this is being attempted at a time of historic financial constraint, with record trust deficits and an intense search for efficiencies. In addition, Britain's departure from the EU could mean major changes and deep uncertainty for health and social care staffing, regulation and workforce. The Nuffield Trust’s focus is on improving the quality of policy-making by providing evidence-based analysis, asking insightful questions and providing a challenging view. Programmes in this area cover: • Commissioning and System Delivery – how the health system is changing, for example, moving to integrated care. • Topical Issues – for example, issues such as Brexit, which impact on the health system. • Funding and Sustainability – impact of spending constraints and how funding is allocated to health and care organisations Workforce: The NHS workforce is under extreme pressure, and it is not just a matter of numbers. Some areas are undersubscribed, but others have an over-supply. New technologies and care models require new types of staff, and training for this highly skilled workforce has long lead times. Getting all of this right has never been more critical, especially with the uncertainty around migration following the country's vote to leave the EU. The development of new models of care is often driven by changes in workforce and vice versa. Being able to make the links between the two areas will be very important. The workforce programme addresses how the NHS manages workforce pressures and develops a sustainable workforce. The Nuffield Trust ensures their research and analysis informs the Government’s strategy for the future health care workforce. Older people and complex care: Older people are among the most intense users of health and social care services and opportunities exist for improving the care offered to them. In particular, the needs of older people with multiple health problems and complex conditions are recognised as being a key driver of health service design utilisation and a sentinel marker of the quality of care. The older people and complex care programme examines models for delivering care to older people and people with complex needs, given the growing number of people with multiple conditions. Quality of care: Patients and the public expect to receive high quality, safe care, where and when they need it. Despite this, it is known that the quality of care is variable – between organisations, different conditions, and different patient groups. It is also known that the UK lags behind other similar countries in treatment of common diseases, and while some aspects of care have improved over time, for many aspects of care improvements in quality have stalled. The level of funding for health and social care will influence what can be achieved, but regardless of this, the Nuffield Trust needs to understand how the quality of care is changing, to generate evidence on what can be done to improve quality, and to ensure that improvements which will make the most difference to patients and the public are prioritised. Quality of care programmes cover: • Quality – Drawing on its other work programmes, the Nuffield Trust uses expertise in measurement and analysis of quality of care, to provide independent scrutiny, and undertakes research to improve the evidence on quality of care. • Evaluation – The Nuffield Trust also considers how effective policies intended to improve quality have been, and what can be learnt, in order to influence future decision makers, locally and nationally. This includes evaluating service changes and innovations in the delivery of care. New models of health care delivery: NHS England’s Long Term Plan, and previously the Five Year Forward View, outlines a vision for how the traditional boundaries between primary care, community services and hospitals will be dissolved over the next five years and beyond. Breaking down the traditional boundaries between different parts of the NHS and social care offers the prospect of reshaping services around the needs of individuals and reducing reliance on hospitals. This will require a move away from single institutions towards networks of care. In this world the capacity of care delivered outside hospitals will need to be boosted through reforms to general practice, while technology and new types of staff enable expertise and information to be shared. The Nuffield Trust will build on the considerable experience and reputation it has in conducting evaluative work of new models of care, with a number of research projects in place with Royal colleges and specialist societies. The Trust will also provide briefings and analysis that help health leaders choose and implement changes, and bring them together to share ideas. New models of health care delivery programmes in this area cover: • Acute Medical Models – models of hospital care and the optimal configuration of services to deliver inpatient services. • Primary Care – future of primary care and role of primary care in a changing health system. • Digital – the impact of new technology on delivery of health care, and opportunities to improve care using technology. Children and young people: The health and wellbeing of children and young people depend on the efforts and commitment of their parents and families, their schools and local communities and the decisions and actions of public service providers and policymakers. This creates a moral imperative to safeguard and promote their interests. There are nearly 20 million people aged 0-24 years old living in the UK, almost a third of the population. There have been long term improvements in health outcomes and quality indicators for children and young people, however, more recently those improvements have slowed or even reversed and internationally he UK compares less well than it might wish. Child health has changed over the last 45 years. Mortality data shows an epidemiological transition away from acute infectious illness towards chronic long-term conditions, yet the way health care services are provided is still heavily hospital focused and reactive. Change has been slow to come due to a long term lack of policy focus on most of the services for children and young people The Children and Young People work programme will develop the evidence base on how problems and challenges could be addressed by policy and decision makers at a national and local level and/or by individual teams and professionals working with children and young people. The work will have a particular focus on what health care services and systems can do, but will also include how the different parts of the wider context for children and young people interact with each other to address the issues. The Trust also aims to help build networks between different organisations and people who can shape the direction of health care services, health systems and other services. The work programmes within the strategic priorities were developed in 2018 and are expected to remain aligned to the strategic priorities above until at least 2020 when they may be reviewed. 5a.ii. Use of HES and CSDS data within programmes and projects Each programme is delivered through individual projects. Projects vary in length and complexity from major research studies which could span a number of years, to shorter term projects resulting in a single output, for example a briefing or presentation. Some Nuffield Trust projects are qualitative, involve analysis of published data, or data from surveys, and so do not require use of HES or other NHS Digital data sources. However, many others are reliant on HES and other NHS Digital-supplied data sets. To undertake such projects the Nuffield Trust has determined that it requires HES data including the Emergency Care Data Set which will replace the HES A&E datasetand the Community Services Data Set which is now available and is a very welcome addition to the existing hospital based HES datasets. Although the methods for use of HES and other patient datasets will vary from project to project, there are a number of common ways in which the data is used. This Agreement permits use of the data by the following methods: • Assessing data quality, completeness, relevance and volumes of data prior to and during undertaking research analysis; • Analysis to provide contextual information about NHS organisations or areas where research projects are being undertaken (in addition to analysis of relevant comparator organisations and areas), for example analysis of volumes of emergency admissions by specialty; • Descriptive analysis of NHS activity and calculating age-sex standardised activity rates, for demographic or other patient cohorts, NHS organisations or administrative areas relevant to understanding NHS and government policies, and identifying gaps in policy; • Using health care activity data to track changes in events such as emergency department attendances, admissions and re-admissions, time on caseload (for community patients). These are important (though imperfect) proxies for health outcomes and tracking trends in these events over time enables analysis of the impact of changes in health services; • Analysis of health care resource use through applying NHS tariff or reference cost data to activity data derived from patient utilisation of services, and analysis of measures of capacity including bed occupancy from utilisation data; • Undertaking detailed analyses of particular health events to identify particular issues with quality of care, for example as part of the harm project (see below), and patients with particular needs (eg frailty). This includes developing indicators of quality of care, covering access, effectiveness, continuity, coordination, safety or outcome; • Examining variation between hospitals, patient groups or areas in use of services to identify populations where there are gaps in care, and also areas delivering high quality care from which the NHS can learn more widely using multivariate methods including standardisation, regression modelling and risk analysis; • Analysis to determine the impact of specific service delivery models, such as the introduction of new pathways of care, or care settings, including acute admission units, same day emergency care, outpatient advice models, primary care networks and other models relevant to current NHS or government policy; • Development and application of risk prediction models by methods including multivariate regression, cluster analysis, decision trees and machine learning for analysis to identify cohorts of patients with similar needs and to analyse variations between hospitals, patient groups or areas and for measuring the impact of service delivery models; • Analysis to understand how wider health system and other factors impact on outcomes and activity, including differences between urban and rural service delivery or needs, impact of deprivation and variation in socio-demographic characteristics of the population and local factors such as education and social care provision and quality; • Analysis to inform international comparisons of health data and quality, including replicating quality measures used in other health systems; • Making evaluations of healthcare innovations more robust by using matched case-control analysis – comparing outcomes or trends in a service being evaluated with similar patients elsewhere; • Evaluations of health care innovations using methods including time-series analysis, including interrupted time series, panel data and cohort studies; • Use of the above methods in combination for particular research projects; • Producing visualisations of analysis and results from the above methods. The data will not be linked with other record level datasets and there will be no attempt to reidentify individuals from the data. The data may, if required, be linked with national datasets in the public domain (e.g. indices of social deprivation) subject to a risk assessment that the linkage will not increase the risk of reidentification of individuals within the dataset. Should the Nuffield Trust wish to undertake a project involving a specific cohort of patients for which a data linkage is required, a separate application to NHS Digital and, subject to approval, a separate Data Sharing Agreement permitting the processing will be required. The number of concurrent projects using HES data will vary, but typically there are 5-6 projects in progress which use HES data at any one time, with perhaps 2-3 being completed in a calendar year. There may also be additional projects for which the analysis phase is complete, but work is ongoing on peer review publications and dissemination of the findings. Projects are grouped within programmes, but frequently cut across other programmes. As the Nuffield Trust is a small organisation, it seeks to maximise impact by undertaking work which can inform more than one programme or strategic priority. Undertaking projects which support multiple programmes enables the Trust to deliver greater benefits to the health and care system. 5a.iii. How decisions are made about projects and use of HES and CSDS data This Agreement permits the Nuffield Trust to use the data for the purposes of projects undertaken within the work programmes described above, 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 aims listed and achieving those aims through one or more of the methods listed above ; • An analysis plan is prepared for each project, setting out the data requirements and methods; • 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 consists 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 the analysis plan detailing what data is permitted for use in the project and how it shall be processed. Project Timescales 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. Project Funding Some projects under the programme will be funded by the Nuffield Trust but funding is also being sought from other partners including National Research and Charitable organisations, such as 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, that is, the Nuffield Trust will be sole data controller for the analytical work. Though the Nuffield Trust may be commissioned by another organisation to undertake a project involving the processing of data under this Agreement, the Nuffield Trust will retain sole discretion for determining if and how the data would be used for any purpose. 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. Data Governance The Nuffield Trust has independently determined the purposes for which it requires and will process the data under this Agreement in terms of its priorities and programmes which will use the data. The Nuffield Trust has sole autonomy for determining if and how the data will be used for projects in support of those priorities and programmes. As such, the Nuffield Trust is the primary data controller and the sole data controller named in this Agreement. In certain projects which involve collaboration with individuals or organisations outside of the Nuffield Trust, it may be the case that there is joint controllership for the specific project or aspects of it but in all cases, the Nuffield Trust will retain sole autonomy for determining if and how the data under this Agreement will be processed and the Trust cannot be compelled by any third party to process the data for any purpose of in any way. The data will only ever be used for purposes that directly support the priorities of the Nuffield Trust as described in this Agreement. Under this Agreement, NHS Digital data will only be accessed by Nuffield Trust personnel (defined as employees, agents and contractors of the Trust) all of whom have been appropriately trained in data security and confidentiality. On occasion, the Nuffield Trust may invite individuals with significant or unique expertise to join the research team and contribute to data analysis. These individuals will either be seconded into the Nuffield Trust or will have an honorary contract with the Trust for the purpose and duration of a specific project or task within a project and as such will be considered agents of the Trust. These individuals would be subject to the same information governance framework as the Nuffield Trust employees and would be required to meet the level required to access the Nuffield Trust’s secure, ISO27001 certified data environment. Should the Nuffield Trust wish to utilise an external organisation as its data processor, a separate application to NHS Digital and, subject to approval, a separate Data Sharing Agreement permitting the processing will be required. 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 with any other third-parties. The Nuffield Trust will produce an annual report for NHS Digital which will detail the outputs from all active and finished projects, which have been delivered during the year, and the planned outputs from new projects. The report will reference the associated strategic priorities and programme(s). Details will also be available on the Nuffield Trust’s website. 5a.iv. Examples of projects The following examples of projects which have used HES data illustrate the range of work already undertaken in recent years, and upcoming projects. These are provided as examples of work the Nuffield Trust has undertaken or is or will be undertaking to meet the objectives of its programmes in support of its strategic priorities. The examples are not intended to form a comprehensive list of projects permitted under this Agreement. Integrated care pioneers evaluation Integrated Care 'Pioneers' are models of care aimed at reducing the impact of boundaries between health and social care providers. The evaluation of the pioneers has wider lessons for the current policy for integrated care systems. • Nuffield Trust programmes: Commissioning and System Delivery; Evaluation; New models of care • Overview: The Nuffield Trust is leading on one work package to develop and monitor a set of system level indicators, as part of a wider project with the DH Policy Innovation Research Unit based at the London School of Hygiene and Tropical Medicine. The analysis of HES data to develop indicators was solely the responsibility of the Nuffield Trust. The LSHTM does not have access to the data. • Data minimisation approach: This project involves looking at time trends across a range of health and social care indicators. The Pioneers were introduced in 2013 but to have a good understanding of trends prior to this, HES data are used from 2004/05 with follow up until 2019/20, when that data is available. The indicators are presented in aggregated form in a dashboard with local authority district as the lowest geographical unit available. For the majority of indicators all ages are included but where possible indicators are restricted to a particular age group. Only variables relevant for each indicator were used. • Duration: The project runs from 2016 to 2021 Medical Generalism The rising numbers of older and more complex patients is one of the most pressing problems facing the NHS. Although they receive the most resource-intensive care, their problems are less likely to be accurately diagnosed and have more adverse outcomes than other age groups. The current models of hospital care, which are heavily based around specialists delivering disease-specific care, serve these patients poorly, as it is often fragmented and poorly co-ordinated. A revival of medical generalism has been suggested to provide better and more cost- effective care. The reality, however, is that there is a paucity of evidence on which to base new models of medical generalism. • Nuffield trust programmes: Older people and complex care; Workforce • Overview: The overarching aim of this NIHR funded research project was to identify the models of medical generalism used in smaller hospitals and explore their strengths and weaknesses from patient, professional and service perspectives. The Nuffield Trust used HES data to create a classification of patients that might benefit from general medical care and, based on this classification, provide a descriptive analysis of the workloads of smaller hospitals. • Data minimisation approach: Hospital Episode Statistics data (year range 2007/08–2017/18) was used to create a classification of patients that might benefit from general medical care and, based on this classification, provide a descriptive analysis of the workloads of smaller hospitals. The final sample included 69 smaller NHS Trusts providing acute medical care in England, although some analyses used only 68 hospitals as a result of merges during the data period. A data set based on ‘Index episodes of care’ for emergency admissions across the selected generalist medicine specialities identified in HES inpatient data 2012/13 for the smaller hospitals cohort was created so that five years of prior patient history for cancer patients as well as three years of subsequent history could be included. Cases with a specific diagnosis indicating specialist care or where patients had been transferred out of hospital were excluded. A data set was created covering 1.9 million episodes in the selected smaller hospitals. Following development of the case mix classification, analysis focused on different data collection years dependent on the nature of the research question. For instance, the degree of alignment between patient case mix and medical generalist/skills mix in smaller hospitals was assessed was based on analysis of the 2015/16 data set. Population level analysis of admission patterns used data from 2017/18. • Duration: The main research phase of the project was from 2016 to 2018. This analysis was undertaken under a previous Data Sharing Agreement with NHS Digital in conjunction with University College London (UCL) which undertook parts of the analysis as a data processor under contract to the Nuffield Trust. Nuffield Trust defined the analysis and manner in which the data should be processed as well as the tools used (i.e. the software). The Trust also owns the outputs. The UCL Department of Applied Health research team carried out the above work on the Nuffield Trust site under the same Information Governance arrangements as Nuffield Trust staff - i.e. a signed confidentiality agreement as evidence that they had read and understood the Trust's Information Security Management System (ISMS), completed equivalent training and worked in the same environment. No data provided by NHS Digital left the Nuffield Trust site and the data was only processed on Nuffield Trust servers. Evaluations of new services for patients outside of hospital The Nuffield Trust has undertaken a number of evaluations of programmes to reduce admissions or readmissions to hospital, through better support for patients at home. • Nuffield Trust programmes: Older people and complex care; New models of care; Evaluations • Overview: This is a programme of work undertaken over a number of years. For example, the Nuffield Trust undertook a project funded by Age UK of services to support often vulnerable older people at high risk of hospital admission, which assessed the impact of this service on future emergency admissions. Previous projects were undertaken for a range of funders including the British Red Cross, Royal Voluntary Services and the Cabinet Office. • Data minimisation approach: These projects took place using data linkage to HES data for specific cohorts of patients receiving innovative services. The Nuffield Trust used HES data from two years prior to the date each individual started receiving the service to allow for calculation of risk of emergency admission scores. To implement these models, the Nuffield Trust used a selected list of fields from inpatient, outpatient and A&E datasets (including admission method, diagnosis codes, procedure codes, A&E investigation codes, outpatient attended/did not attend). The Nuffield Trust compared each group of service recipients with a selected matched control group – matching one control person to each service recipient. The Nuffield Trust selected controls from a larger pool of possible control individuals. This larger pool of possible control individuals were selected to reflect the intervention cohort – eg they were the same ages (for example 55+ or 60+), and lived in similar areas (as defined by ONS and other analysis). Risk scores were calculated for all possible controls – involving again two prior years of HES data. For the evaluation outcomes, the intervention and matched control groups were followed up for a limited number of months (maximum 16, but more usually 6-9) on a limited number of activity measures. • Duration: This was undertaken from 2013 to 2019 Comprehensive Geriatric Assessment (CGA) The CGA was a multidisciplinary process designed to assess a frail older person’s medical conditions, mental health, functional capacity and social circumstances. However information is lacking on the types of patients that might benefit the most. The aim of this work is to describe existing models of care and to validate tools to deliver CGA on a hospital wide basis. • Nuffield Trust programmes: Older people and complex care; Quality of Care; Evaluations • Overview: This was a collaborative project undertaken as an NIHR funded project undertaken with the Universities of Leicester and Newcastle. The project incorporated linked HES, ONS and clinical data, managed under a specific Data Sharing Agreement (DARS-NIC-383324-D6B8T). • Data minimisation approach: Three clinical cohorts were linked to HES as part of this project. The recruitment dates for these ranged from 2006 to 2012 and therefore, HES was required from 2004/05 to 2016/17 to allow a period go

Expected Benefits:

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 NHS Digital/HSCIC to receive patient datasets since that time. The Trust publishes its reports on the Nuffield Trust website and in peer reviewed journals where appropriate. Analysis of HES data will support the Nuffield Trust in delivering its objectives and meeting their charitable purposes of providing evidence to improve the health of the population. Examples are presented below, linked to each of the objectives: Improving the evidence base that leads to better care for people in the UK through research and analysis: • Evaluation of health and care innovations enable the NHS to identify whether new services or models of care are meeting their objectives, in order to identify whether they should be scaled up and rolled-out, or whether they should be stopped. This ensures more effective use of public money and improved services for patients. • Major research projects such as Comprehensive Geriatric Assessment provide tools and analysis which organisations can use to identify patients with particular needs, and monitor delivery of the quality of care to address those needs. • Targeted projects such as the Prisoner health project provide new evidence on the care delivered to this patient group which has significant health needs, and for which there are considerable challenges in delivering high quality care. This information will identify gaps in care, and options to address these to be developed based on high quality evidence of need. Use of independence to provide expert commentary, analysis and scrutiny of policy and practice • The Nuffield Trust will use HES data to develop measures of quality of care, as part of Quality Watch, other projects, and responsive research. Identifying areas where care could be improved supports public debate of the priorities of the NHS, and provides evidence for policy makers when developing health policies • Projects such as the Medical Generalism project will produce evidence on the impact of the trend towards increased specialisation in medicine on the ability of hospitals to deliver high quality of care, particularly focusing on the care delivered to patients in smaller hospitals. This is an example where analysis of HES data is uniquely able to provide evidence on the quality of care within hospitals, for which aggregate performance data is not suitable. Bring policy-makers and NHS staff together to raise issues and identify solutions: The role of the Nuffield Trust as an independent and respected organisation enables them to bring together clinicians, managers and policy makers to review evidence, and contribute to interpretation of findings and analysis. This improves the quality of outputs, and their impact, and ensures that analysis undertaken is focused on addressing the issues which matter in the health system, and on achieving maximum impact for the work the Nuffield Trust do.

Outputs:

A key aspect for all the research projects undertaken is ensuring that learning and research findings are disseminated widely, using press and television media, social media, conferences and practitioner networks. The Nuffield Trust aims to maximise the impact of its work, to ensure the greatest benefit to the health and care system, in line with their charitable purposes. A communications plan is developed for each programme and project, based on the most effective way of securing impact for that project. Each strategic priority has a dedicated web page on the Nuffield Trust website, which provides an overview of why the topic is important, the overall approach, and links to programmes and projects related to that priority. Outputs from a project could include: • Nuffield Trust reports or briefings • Blogs commenting on the findings • Papers for peer reviewed publications in quality academic journals • Sharing findings with the trade press (for example Health Service Journal) • Conference presentations or posters • Reports for commissioners, published on the relevant organisations website • Bespoke events • Toolkits or resources to provide information for local NHS organisations • Press releases and tweets to publicise outputs 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 their partner communications teams, to maximise the impact of findings. The combination of outputs will vary from project to project. For example, the Comprehensive Geriatric Assessment project, the outputs delivered or planned have so far included: • A project report to the National Institute of Health Research that is waiting to be published (https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/12500302/#/) • A peer reviewed publication in the Lancet presenting the methodology and validation of the hospital frailty risk score (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)30668-8/fulltext) • A toolkit in excel which is available at NHS hospital trust and local authority level, for local needs assessment and benchmarking (https://www.nuffieldtrust.org.uk/research/comprehensive-geriatric-assessment-needs-assessment-tool), that the Nuffield Trust has promoted through its twitter feed (https://twitter.com/NuffieldTrust/status/1034089904735768576, https://twitter.com/NuffieldTrust/status/1033356320915824640) and it has also been disseminated by the British Geriatrics Society (https://www.bgs.org.uk/resources/hospital-wide-comprehensive-geriatric-assessment) • A guest blog from Professor Simon Conroy on the Hospital Frailty Risk Score discussing the advantages of being able to identify older people at risk in hospitals, and how it could make a real difference (https://www.nuffieldtrust.org.uk/news-item/the-hospital-frailty-risk-score) • A BGS event for clinicians on frail older people which covered the work from the programme: http://www.acutemedicine.org.uk/wp-content/uploads/2018/04/BGS_Urgentcare_2018_v1-2.pdf • European Geriatric Medicine Society Conference in October with two posters to present findings: http://www.eugms.org/2018.html • Two further papers for peer reviewed journals are planned covering specific aspects of the findings. • The project was a finalist in the ONS Research Excellence Awards 2018 (https://www.ons.gov.uk/aboutus/whatwedo/statistics/requestingstatistics/onsresearchexcellenceaward) which was a further opportunity to disseminate the findings and methods within the wider research community. For the Quality Watch programme, outputs included: • Over three hundred healthcare quality indicators on a dedicated website (now part of the Nuffield Trust website). • 14 “Focus on” reports, two briefings, and several data blogs. • Four annual reports that reviewed the state of care quality in the NHS in England and how it had changed over time. • The Nuffield Trust provided a platform for internal and external expert commentary, with 135 editorial items (79 blogs (34 by external authors); 17 ‘latest data’ posts, covering monthly NHS combined performance summary data; 13 ‘indicator update’ posts, detailing stories emerging from ongoing data updates on the site; 26 news stories (mostly comprising press releases)). • The Nuffield Trust also held a large number of events (QW conferences: October 2013, October 2014, November 2015; All Parliamentary Health Group events, February 2014 and December 2014; Social care event at Nuffield, May 2014; Allied Health Professionals event at Nuffield, November 2014; Public health roundtable at Nuffield, June 2016; Children and Young People roundtable at Nuffield, June 2017). Previous outputs have also included: • Integrated Care Pioneers: Outputs from the HES data analysis elements of the project are a system level dashboard to monitor indicators of integration in pioneer and non-pioneer areas, peer reviewed publications of this analysis, Nuffield Trust blogs/briefings on analysis challenges and research reports for the Department of Health. • Medical Generalism: The project report has been submitted to NIHR for review and work is in progress on preparing papers for peer reviewed journals and other dissemination routes. A conference presentation has been accepted on the method used to develop patient pathways using HES data, at the Health Services Research UK conference in July 2019. • Evaluations of new services for patients outside of hospital: Outputs from the project included interim and final reports for funders, Nuffield Trust blogs and other publications. For example, the Nuffield Trust produced reports for Age UK at different stages of the project, a Nuffield Trust report and blog, and a comment article for the Health Service Journal. A seminar on findings from these evaluations is planned for later in 2019. • Comprehensive Geriatric Assessment (CGA) Outputs from the project are described in detail above. Further work on peer reviewed papers from the project is ongoing. • Harms and Quality of care measures from routine data: Outputs from the project include a project report for NIHR and papers which have been submitted to peer reviewed journals. • Prison Health: Outputs from the project include Nuffield trust reports, blogs and briefings, conference presentations and papers for peer reviewed journals. • London Quality Standards (LQS): Internal reports to funders were produced, along with Nuffield Trust publications and blogs. Work is ongoing on papers for peer reviewed journals. • Organisation of Primary Care: Outputs include a range of external publications and reports, and papers in peer reviewed journals. In the past year outputs for the Nuffield Trust as a whole have included: • 25 reports (in all cases with complementary blogs, charts or infographics) • 12 briefings and explainers • 90 blogs and long reads • 10 charts and infographics (in addition to those in reports, blogs and briefings) • 44 press releases • Approximately 1200 Nuffield Trust tweets (The Trust has 45000 followers) • 20 citations for NT staff in external peer reviewed journals • 70 speaking engagements • 10 corporate events • 426,147 web site visits, averaging 1,674 per day across 610,413 sessions • 100+ updated QualityWatch indicators and around 300 tweets All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES (or appropriate) Analysis Guide.

Processing:

NHS Digital will send quarterly and ‘Annual Refresh’ data extracts of pseudonymised HES Accident & Emergency (to be replaced with Emergency Care), Outpatient, and Admitted Patient Care and Community Service Data Set data to the Nuffield Trust by Secure Electronic File Transfer. Under this Agreement, the data will only be processed by Nuffield Trust personnel (defined as employees, agents and contractors of the Trust) all of whom are either individuals who: i) are substantively employed researchers working under contract on behalf of the Nuffield Trust; or ii) are employed by Nuffield Trust as specialist third party consultants having either being seconded into the Nuffield Trust or have an honorary contract with the Nuffield Trust for the purpose and duration of a specific project or task within a project. All research staff are subject to confidentiality requirements to access data to support business objectives and required to complete mandatory data security training annually Whilst the nature of detailed analysis in relation to each project varies, the broad context of processing is consistent. In summary: • The data is downloaded from NHS Digital to the Trust’s Research Server. The server is held on-site, and access is restricted to named individuals according to The Nuffield Trust’s security policy using Microsoft Role Based Access Control (RBAC). • The data is held within separate folders within the server. • Remote access to the database is permitted, but only through Citrix via secure token and with local printing and downloading disabled. • Only staff who have signed a confidentiality agreement and have received IG training are permitted access. • 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. • The researcher will view the data and select a specific cohort for each 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 each study’s group of interest. Depending on the research a similar control group may be established. • 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. • No record level data would be linked to this dataset (without an explicit separate agreement with NHS Digital), but it may be combined with publicly available demographic or geographic data, for example in relation to local Trust performance • Outputs consist of aggregate data (or indicator/statistical data) only. In all such work, The Nuffield Trust analyses patterns of hospital activity by area, by year, by condition or by provider, developing comparative analyses and standardising for a range of episode level, or patient level variables – such as age, the presence of a long terms condition, prior patterns of use. The analyses commonly follow the health and care of a well-defined cohort of individuals over a lengthy period of time. Such analyses require complex processing for fair comparisons and to capture activity for whole populations – something that only nationally collated data can provide. 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 use of this data will be limited to Nuffield Trust for the purposes outlined above only. Data published 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. From the date this Data Sharing Agreement takes effect, the following separate Agreements between NHS Digital and the Nuffield Trust will be terminated. • DARS-NIC-384572-J7P6Y • DARS-NIC-383324-D6B8T • DARS-NIC-336478-Z7Q9F • DARS-NIC-204228-D8J4D Any ongoing processing of the data for purposes described in the above Agreements, including retention of manipulated data post-analysis, may continue under this Agreement on condition that the processing conforms to the permitted uses described in section 5 above.


Project 3 — DARS-NIC-195377-M9L8Z

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2018/10 — 2018/12.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Outpatients

Objectives:

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 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. In everything the Nuffield Trust do, they strive to be: • independent and free from vested interests; • rigorous, robust and evidence-based in the work we undertake; • relevant, supportive but also challenging when we need to be; • open and engaging with all those we come into contact with; • an organisation that makes a difference to the quality of policy-making and practice in the UK. For the purpose of these legitimate interests, the Nuffield Trust is undertaking the following study: Prisoner health: Understanding prisoners’ healthcare needs, their use of healthcare services and quality of care received. Delivery of healthcare in prisons and other secure settings presents unique challenges and it is acknowledged that there is a lack of quantitative evidence regarding healthcare quality in these environments. Ultimately, this research aims to use routine hospital data to better understand the healthcare needs of prisoners, their use of hospital services and how the quality of care for prisoners compares to the non-prisoner population (no specific control cohort will be created for this study). There are two aspects of the proposed analysis: 1. The Nuffield Trust will explore the potential of two specific HES data fields; ADMISORC (where the patient was before they were admitted to hospital, with options ranging from usual place of residence (home) or other options, such as penal establishment and DISDEST (where the patient was due to go when they leave hospital, with options ranging from usual place of residence (home) to other options such as penal establishment) to reliably identify people in penal establishments who access secondary healthcare services. The Nuffield Trust will look at how many people are recorded as either being admitted to, or returning to a penal establishment from hospital, as well as how this relates to other demographic information such as information about the location of the health care provider (Procode3) as well as LSOA, which is area of residence. This phase of analysis is necessary to assess the accuracy with which these fields are completed, any specific anomalies which may impact on how they are interpreted and therefore the extent to which they can be used to validate the methodology to be applied in the work described under point 2. Data to be analysed will cover the period 2005/2006 to 2017/18, as 2006 marks the point at which commissioning of healthcare services in prisons in England became the responsibility of the NHS; representing a significant change in commissioning responsibilities. Please note: This is existing data the Nuffield Trust already holds for separate purposes under a separate Data Sharing Agreement. This Agreement will permit the reuse of a subset of that data and therefore no additional data is required for this aspect of the analysis. 2. Analysis will be undertaken by the Nuffield Trust using prison postcode as a proxy to identify patients from a penal establishment; a methodology which the Nuffield Trust has successfully applied in the context of care home residents in past research. Based on the findings from a prior phase of analysis which will not involve HES data (consisting of a literature review and conversations with experts in the field), analysis will be undertaken to determine what can be learned about the health of prisoners based on the use of hospital services. This may include analysis relating to specific cohorts of prisoners (for instance, women or young offenders) or looking at specific chronic conditions. Data to be analysed will cover the period 2017/18. Please note: The Nuffield Trust already holds the HES data file (disseminated under separate Agreement DARS-NIC-84572-J7P6Y), and therefore the only additional data required is a list of the Nuffield HES ID’s, associated study IDs and EPIKEY/ATTENDKEY/AEKEY* of individuals from the postcode list provided to NHS Digital who are present in HES Inpatient, Outpatient or A&E data in the period 2017/18 respectively. *EPIKEY/ATTENDKEY/AEKEY are record identifiers created by the HES system. Access to these record identifiers will enable identification of where individuals have multiple admissions whilst in the same location. This research will provide valuable information on the quality of data collected regarding prisoners in routine datasets, as well as the potential for postcode methodology, to accurately identify individuals from prison postcodes accessing secondary care services. It has been acknowledged that there is at best limited quantitative evidence regarding the healthcare needs of prisoners; something this research will provide. If successful, the approach would provide a means of assessing how the healthcare needs of prisoners are changing over time, and the impact of any targeted interventions. Please note: There are no partner organisations involved in this project; therefore, the data under this Agreement will not be accessed by anyone other than the Nuffield Trust project team. The project is funded by The Health Foundation, an independent charity committed to bringing about better health and health care for people in the UK.

Expected Benefits:

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. The following provides benefits for the specific project; It is acknowledged that there is a lack of quantitative evidence regarding healthcare quality in penal environments, and therefore a central benefit of this project is that it will contribute to balancing this evidence gap. In addition, information about prisoners’ healthcare needs, where it does exist, tends to be held locally in silos but the Nuffield Trust project will enable a wider picture of the health of prisoners across England to be evaluated. The Nuffield Trust will widely disseminate the research findings to policy makers, advocacy groups and experts in the field of prisons and prisoner health to ensure that the impact of the project (and therefore its benefits) are as wide-ranging as possible. Engagement with wider stakeholders is already underway, and in demonstration of the importance placed on achieving the maximum benefits of the project, the Nuffield Trust has built in a six-month window to the project time-line to allow for development of these types of relationships. An expert panel is being established to spread the benefits within their respective organisations. Members already include representatives from NHS England, CareUK, the RCGP Secure environments group, an Independent Monitoring Board rep, the Howard League, a head of prison healthcare, and academics working in prisoner health research. Engagement with the expert panel and other experts will ensure that the project findings can feed into the development of national strategies regarding prisoners’ healthcare needs. For instance, the Nuffield Trust has already been approached by a clinician developing guidelines for the care of prisoners requiring dialysis so that the project findings can inform guideline development in this area (expected timeline late 2018/ mid 2019). It is also expected that the work will be used as an evidence source by advocacy groups to highlight healthcare issues faced by prisoners. As an example, the Nuffield Trust has already been approached by the Queen’s Nursing Institute (the QNI Support health professionals to provide better healthcare for people in prison) Homeless health programme to include a link to the project introductory blog in their News update which is shared with 1500 contacts nationally (due to be released May/June 2018). The Nuffield Trust will also submit articles for publication in peer review journals (Mid 2019) so that the approach adopted can be replicated in future by others to continue to assess quality in prison healthcare.

Outputs:

All outputs will be aggregate with small number suppressed in line with the HES Analysis Guide. Anticipated dates of 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. December 2018: Phase I progress report This will be an interim report to the funders, the Health Foundation – reflecting the key findings from Phase I (non-HES based analysis) and confirming the approach to be adopted in Phase II, the HES based analysis. It will outline the selection of the outcome measures of prison healthcare quality selected for examination in the Phase II quantitative analysis. This will include background literature on measures of healthcare quality in prisons as well as feedback from the expert panel. The expert panel includes individuals working within prison and prison health who are supporting the project. July 2019: Final report and summary This will be the final report to the funders, the Health Foundation. It will provide details of the findings emerging from the phase II HES based analysis. July 2018, December 2018 and July 2019: Meetings of the expert panel. Throughout the projects there will also be blogs and briefings to publicise the research and promote key findings. Two introductory blogs for the project have already been published: Davies M (2018) "Numbers matter in prison", Nuffield Trust comment. https://www.nuffieldtrust.org.uk/news-item/numbers-matter-in-prison Davies M (2018) "Us and them: the impact of prejudice on prisoners’ health care", Nuffield Trust comment. https://www.nuffieldtrust.org.uk/news-item/us-and-them-the-impact-of-prejudice-on-prisoners-health-care Papers will be submitted for peer reviewed journal publication in the summer 2019.

Processing:

The data will only be accessed and processed 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) and only for the purposes described in this application. 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 individuals 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 undertake descriptive analysis – such as reasons for admission, length of stay and associated co-morbidities. Based on the findings of the Phase I literature review, focused analysis will be undertaken relating to specific cohorts of prisoners (for instance, women or young offenders) or looking at specific chronic conditions. 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. 7. Comparisons will be made based on the standardised national rates for age and sex bands. E.g. national rates of emergency admissions would be used to construct expected rates of emergency admissions within the prison cohort. The Trust is able to then compare the prison cohort against national standardised rates. 8. 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. 9. No record level data would be linked to this dataset, but Locally sourced Escort and Bedwatch (E&B) data from a sample of prison establishments will be used as a means of validating the volume of cases emerging from the HES postcode-based analysis. E&B data is based at an individual prison level and is essentially a record of prisoners moved to or from hospitals whether for urgent or unplanned care and the associated cost. Please note: E&B data contains no individual information about prisoners (such as their name, prisoner number or age). It is purely a record of the number of transfers and reasons for transfers. The Nuffield Trust will not be attempting to link this to HES data – it is purely being used to determine if the volume of cases emerging from the HES data reflects the volume of cases recorded for financial monitoring. This is important cross validation which will strengthen the HES based analysis. 10. Outputs are thus produced which consist of aggregate data (or indicator/statistical data) only. For the postcode-based aspect of the analysis, the Nuffield Trust will provide NHS Digital with a list of addresses (including postcode) of all prison establishments in England (n=118) in addition to a study identifier for each location. In return, NHS Digital will provide a list of the Nuffield HES ID’s, associated study IDs and EPIKEY/ATTENDKEY/AEKEY of individuals from the postcode list provided who are present in HES Inpatient, Outpatient or A&E data in the period 2017/18. Please note: No local datasets will be sent to NHS Digital – purely a list of the prison addresses. The datasets necessary for the study are listed below: Data required: 1. 2005/2006 – 2017/18 APC Using a subset of data held by the Nuffield Trust under Agreement DARS-NIC-84572-J7P6Y, the Trust will explore the reliability of ADMISORC and DISDEST in a preliminary phase of analysis. The Nuffield Trust has undertaken some preliminary tests and has confidence that the outcome will be the identification of prisoners only. As with using any data set, there are risks involved, but a number of controls are in place to confirm that only prisoners are identified. The Nuffield Trust intends to feedback to NHS Digital in a meaningful way on whether the initial postcode approach fails at a secondary control. See below for a summary of the controls. Factors which minimise the risk: 1. The use of the prison postcode is an initial safeguard, as prison postcodes relate just to individual prisons and therefore people in nearby residential accommodation will not be included based on having a shared postcode. Examples of this that have been checked include: - HMP Belmarsh (SE28 0EB); HMP Thameside (SE28 0DF); and HMP/YOI Isis (SE28 0FB) are all located on the same site (Western Way, London) but have different postcodes - HMP Wandsworth (SW18 3HU) postcode is separate to those of neighbouring houses on Heathfield Square. - HMP Bronzefield (TW15 3JZ) – nearest road is Ruggles-Brise Road, which has a postcode of TW15 3LD / 3LF. - HMP/YOI Feltham (TW13 4ND) – this is on Bedfont Road, and even the visitors centre has a different postcode (TW13 4NP). 2. If a prison officer has an injury which requires them to go to Hospital, they are identifiable only by their home postcode within HES, which the Nuffield Trust will not have access to, and as their home postcode will not be the prison, their data will not be captured using the prison postcode methodology. Additional steps: 1. Sensible cross-checks will be undertaken such as making sure HESIDs linked to male prisons do not include details for females, and vice versa. Similarly, Young Offender Institutions or Secure Training Centres would not be expected to include HESIDs for individuals above the age range threshold for such establishments. 2. A small number of prisons have accommodation for staff onsite. It is unlikely that such accommodation would be staff members’ full time permanent residence but to minimise the likelihood of any prison staff being included within the dataset diagnostic codes will be examined to look for reference to admissions related to ‘Problems related to employment and unemployment’, as well as the sorts of checks identified under point 1. Finally, as with all our reporting, small numbers will be suppressed and so no individual officers (or prisoners for that matter) will be identifiable in reporting. 2. 2017/18 APC, OP, A&E, HES Data. Please note: The only additional data required is a list of the Nuffield HES ID’s, associated study IDs and EPIKEY/ATTENDKEY/AEKEY of individuals from the postcode list provided to NHS Digital who are present in HES Inpatient, Outpatient or A&E data in the period 2017/18. Additional note - third parties: The Nuffield Trust will not provide access to record level data for any unnamed third parties, even where these third parties are study partners. The use of this data will be limited to the 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. Wavex Technology provide Nuffield Trust with services of managed IT services. They currently have domain level credentials but not access to the data with their accounts. They do not process or store data including NHS Digital data. Wavex have signed an updated contract with Nuffield stating: “Recipient undertakes, not to access sensitive research data residing on Nuffield Trust’s Research hardware. Any attempt by recipient’s employee to access the data, either through bypass of the security features, or amendments to the security settings would be seen as a material breach of the contract and could result in immediate termination to their contract.” Data Protect UK provide Nuffield Trust with services of storing encrypting backup tapes at their storage facility for the purposes of disaster recovery. Data Protect UK do not have access to the NHS Digital data on the tapes. The Nuffield Trust shall ensure access to data disseminated by NHS Digital is strictly prohibited and must not be accessed by the Trust’s IT Managed Services Provider.