NHS Digital Data Release Register - reformatted

London North West University Healthcare NHS Trust

Project 1 — DARS-NIC-131964-Q6L1J

Opt outs honoured: Y

Sensitive: Non Sensitive

When: 2018/03 — 2018/05.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012)

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Admitted Patient Care
  • Office for National Statistics Mortality Data

Benefits:

Overall, the NCASRI programme aims to determine the scope, provision, quality and cost-efficiency of specialist rehabilitation services for adults with complex needs following major injury across England. It will provide high quality comparative data on service provision and outcomes across different providers, mapped onto national quality standards for rehabilitation from the National Service Framework for Long Term Conditions (NSF for LTC), the British Society of Rehabilitation Medicine (BSRM), NHS England and NICE. The feasibility study will identify if it is possible to use HES, HRG and ONS data to identifying the pathway and outcomes from existing data sources for patients who require specialist rehabilitation on discharge from MTCs, but do not subsequently attend. It is anticipated that it will be challenging to derive meaningful data, such as the number and duration of episodes of in-patient treatment with (HRG) VC codes as it is well known that rehabilitation is not coded very well in HRGs. This in itself will be useful to feed back to NHSE, suggesting more rigorous coding in the future. Meaningful data could be used to highlight any inequalities that may exist between patient care and outcome. Where possible, comparative data will be presented for each MTC which may highlight inequality in pathways of rehabilitation, depending on the data retrieved from DARS. If there is sufficient data, then recommendations could be made where inequity of access to rehabilitation are identified. This activity is in the patient, carers, and public interest so that UKROC can facilitate improvements in specialist rehabilitation services.

Outputs:

The data will allow an analysis and description of outcomes of major trauma patients such as those who do not receive rehabilitation or death to presentation characteristics and process information. This will be linked with data collected in the TARN database and the UKROC database such as early implementation of the rehabilitation prescription, prompt referral and transfer times to rehabilitation, and appropriate levels of specialist input. The outcomes of the linkage will be presented in a report to HQIP in June 2018. This will be the final report submitted to HQIP at the end of the three year funded audit period. Two previous annual reports were delivered to HQIP. The first report focused on the access and organisation of specialist rehabilitation and major trauma in England and compliance with standards as set out by several national organisations. The second year report reflected on the challenges of prospective data collection and reported on some interim analysis of prospective data collected by major trauma centres. The final report will report on all data collected during the first year of data collection as well as compliance to standards and the outcome of the feasibility study. The report will be published nationally through NCAPOP in printed form and on the NCASRI website. Expected publication date is Autumn 2018. Local data will be shared with contributing providers (including Major Trauma Networks and commissioning bodies ( NHSE and CCGs). Any data provided to trusts will only be in the form of aggregated outputs with small numbers suppressed - no data provided directly from NHS Digital will be provided to trusts. Results of the feasibility study will be available on-line and will also be presented at the NHSE Disability and Rehabilitation Clinical Advisory Group. Results will also be presented at selected conferences. All outputs will contain only aggregate level data with small numbers suppressed in line with the HES analysis guide.

Processing:

For the purpose of the feasibility component of the audit, TARN will send to NHS Digital a cohort of patients (cohort size 2500). The cohort of patients will be created by using a prior linkage which is covered under a separate Section 251. TARN data will be linked to UKROC data – the patients identified in the TARN data as having complex Cat A or B needs who did NOT subsequently receive specialist rehabilitation (as identified through the UK ROC data base) will now form the target population to create the cohort that will be sent to NHS Digital and is the subject of the agreement. 1. TARN will send a list of these patients to NHS Digital using a study ID (TARN ID), NHS number, DOB and gender. 2. NHS Digital will return the requested data set to the NCASRI team with the TARN ID and no other identifiers. Only Month and Year of Death is requested from the ONS Mortality data. 3. The HES and ONS data will then be analysed by the NCASRI team for descriptive analysis of patient pathways and outcomes. Analysis will: 3.1 Identify any patients who have died in the period from the ONS-Mortality dataset – these will be excluded from the denominator of patients who should have received rehabilitation. 3.2 Linked HES data will be used for the remaining patients to examine the proportion who were admitted to other in-patient services during the period. Where possible Healthcare Resource group (HRG) codes we will be used to determine: • The total number of episodes for acute care and the duration in hospital care. • The number and duration of episodes of in-patient treatment with (HRG) VC codes, indicating admission solely for rehabilitation related to trauma (VC06Z (brain injury), VC08Z (spinal injury), VC14Z (amputation), VC24Z (other musculoskeletal), VC30Z (burns), VC36Z (other trauma) in services not registered with and reporting to UKROC (eg Level 3 services). 3.3 Results and reporting will include information on the proportion of eligible patients who, after discharge from the MTC: • appear to have received further acute care and/or rehabilitation in other services • appear to have had no further in-patient treatment • patients who have died Data will only be handled by the NCASRI team members who are substantive employees of London North West Healthcare NHS Trust, Northwick Park Hospital. Data provided by NHS Digital will only be stored on secure servers based at London North West Healthcare NHS Trust. Parts of the audit, and a proportion of funding is managed and subcontracted to King’s College London but staff employed directly and only through them will not be involved in the data analysis, processing, or storage of the data provided by NHS Digital. 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 ie: employees, agents and contractors of the Data Recipient who may have access to that data). There will be no requirement nor attempt to re-identify individuals from the data. All processing of ONS data will be in line with ONS standard conditions. The data from NHS Digital will not be used for any other purpose other than that outlined in this agreement. Linkage of data will only be for the purpose of this Agreement and not for any other purpose. There will be no attempts to re-link any of the data for any other purposes not stated in this agreement. There will be no attempt to re-identify any of the data. All processing of ONS data will be in line with ONS standard conditions. All outputs will be restricted to aggregate data with small numbers supressed in line with the HES analysis guide.

Objectives:

The National Clinical Audit of Specialist Rehabilitation following Major Injury (NCASRI) was commissioned in 2015 by the Health Care Quality Improvement Partnership (HQIP), and funded by NHS England as part of its National Clinical Audit and Patient Outcomes Programme (NCAPOP). King's College London provide HQIP with advice on the audit and have submitted the application for data on behalf of HQIP. It is HQIP who determine the purpose and are acting as Data Controllers. It is a three-year programme which will determine the scope, provision, quality and efficiency of specialist rehabilitation services across England and improve the quality of care for adults with complex rehabilitation needs following Major Trauma. Outcomes and quality of care will be evaluated in accordance with standards and recommendations laid out in national documents from the Department of Health and NHS England (NHSE), the British Society of Rehabilitation Medicine (BSRM) and the National Institute of Clinical Excellence (NICE). An organisational audit, mapping the current rehabilitation service provision and performance against the standards were reported on after the first year of the audit (July 2015 – June 2016). The second year of the NCASRI audit focused on a prospective clinical audit of new patients presenting within NHS Major Trauma Centres (MTCs) who have complex needs and receive specialist rehabilitation (July 2016 – August 2017). The focus of the second year of the audit has involved tracking of patients identified as having complex rehabilitation needs when they leave the Major Trauma Centre to determine: a) whether they received the specialist rehabilitation they were referred for and b) what the outcomes were. The final and third year of the audit will combine aspects of year one and two and also include a feasibility study looking at the viability of tracking patients using NHS Digital data for patients that were referred to rehabilitation but were not admitted. The data that NHS Digital will provide is being requested to answer the feasibility component of the audit only. The aim of the feasibility study is to identify the pathway and outcomes for patients who require specialist rehabilitation on discharge from MTCs, but who do not subsequently attend. HES and ONS data obtained through this request will help to describe the pathways that patients may follow if they are not admitted to a rehabilitation centre. Unfortunately, due to lack of capacity within the specialist rehabilitation services, many patients who still have complex rehabilitation needs at the point of discharge from MTCs are repatriated to their local district general hospitals or trauma units to wait for a specialist rehabilitation bed to become available. Many patients may never actually get to those rehabilitation services, but the reasons why are unknown. Some patients may improve spontaneously to a level where their needs can be met by their local non-specialist rehabilitation services, but others simply 'get lost' in the system. This feasibility element of the audit wishes to explore if it is possible to track where patients are (using HES, HRG (Health Resource Group) and ONS data), and once they are tracked, identify reasons for admission, e.g. rehabilitation or other acute care. The general NHS information systems collate little or no information about rehabilitation following trauma. However, there are now well-established specialist national databases, although not linked, that systematically collect a wide range of clinical data on patients following major trauma. These are: 1. TARN's database that collects identifiable patient level data on the acute care phase (including information about rehabilitation needs gathered through a ''rehabilitation prescription") for all patients admitted to MTCs across England that meet certain requirements. 2. UKROC's database collates clinical information on needs, input and outcomes for all episodes of in- patient specialist rehabilitation in England. Data linkage between the Trauma Audit Research Network (TARN) and UKROC (UK Rehabilitation Outcomes Collaborative) datasets is underway to identify the patients common to both datasets using their NHS number. The Trauma Audit Research Network (TARN) was founded by the University of Manchester and Salford Royal NHS Trust in 1989 when research showed that there were preventable trauma deaths in the UK. TARN is based at the University of Manchester which is on the same site as Salford Royal NHS Trust. TARN is thus a university run network processing NHS patient data. TARN helps hospitals to collect and evaluate data on their trauma care (treatment of serious injuries such as head injuries, chest injuries and broken limbs) and how they rate in comparison with other Trusts. It then advises NHS Trusts on how the care could be improved. TARN provides a standard measure of the process at each stage on the patient pathway, thus measuring the performance of the system. The results depend on seniority of staff, speed of service and the number of survivors per caseload or the right patient at the right place at the right time. All Major Trauma Centres have to submit data to TARN database to incentivise compliance and good quality trauma care in England. An NHS England best practice tariff is attached to each patient for whom data is submitted. The UK specialist Rehabilitation Outcomes Collaborative (UKROC) database was established originally through an NIHR-funded Programme Grant as the national clinical data set for specialist rehabilitation and to inform tariff development under the Payment by Results Programme. It is based at Northwick Park Hospital - London North West Healthcare NHS Trust. Since 2012 it has provided the NHSE commissioning dataset for specialist rehabilitation and now has over 30,000 recorded case episodes. In addition to activity and contract monitoring, it provides quarterly national bench-marking reports on quality and outcomes. The UKROC dataset comprises: • Demographics – age, gender, diagnosis • Commissioning data – CCG, funding source etc • Processing data (dates of assessment, admission, discharge; waiting times from referral to admission, length of stay) • Discharge destination • Clinical information - collected using a series of validated tools on o individual needs for rehabilitation (complexity), o the inputs provided to meet those needs and o outcomes in terms of gains in functional independence and cost-efficiency. UKROC systematically collates episode data for all patients admitted for in-patient specialist rehabilitation across England. This includes all 65 designated Level 1 and 2 rehabilitation services, as well as a number of other rehabilitation providers offering ‘slow-stream’ rehabilitation in the context of specialist nursing homes or other community-based services. Rehabilitation units receive banded tariffs depending on the complexity of the patients they admit as well as the staffing and resource requirements to treat patients. This is known as the different ‘levels’ of rehabilitation units. Level 1 Rehabilitation Centres (Tertiary ‘specialised’ rehabilitation services) are high cost / low volume services, which provide for patients with highly complex rehabilitation needs that are beyond the scope of their local and district specialist services. These are normally provided in co-ordinated service networks planned over a regional population of 1-5 million through specialised commissioning arrangements. These services are sub-divided into: • Level 1a - for patients with high physical dependency • Level 1b - mixed dependency • Level 1c - mainly walking wounded patients with cognitive/behavioural disabilities. Level 2 Rehabilitation Centres (Local/district specialist rehabilitation services) are typically planned over a district-level population of 350-500K, and are led or supported by a consultant trained and accredited in Rehabilitation medicine (RM), working both in hospital and the community setting. The specialist multidisciplinary rehabilitation team provides advice and support for local general rehabilitation teams. Level 3 Rehabilitation (Within each locality): Local non-specialist rehabilitation teams provide general multi-professional rehabilitation and therapy support for a range of conditions within the context of acute services (including stroke units), intermediate care or community services. The NHSE Service Specification for specialist rehabilitation identifies four categories of rehabilitation need (A,B,C,D) and three levels of specialist rehabilitation services (1, 2 and 3) • The majority of post trauma patients will have category C or D needs which can be met by their local general rehabilitation services. • A small number with more complex needs (category B) require the skills and facilities of a local specialist (Level 2) rehabilitation service and • A very small number of patients with highly complex needs (Category A) may require treatment in a tertiary (Level 1) regional service. The TARN database already collects NHS numbers, however until recently the UKROC database only collected de-identified data which made it impossible to link these data-sets in order to track patients from the acute care centres into specialist rehabilitation. There was thus no way of knowing whether patients who are identified as requiring specialist rehabilitation as they leave the MTCs actually receive it, and if they do, what their outcomes are. In order to better understand the outcome of MTC patients that received rehabilitation, section 251 permission was applied for to enable data linkage between MTC data, collected in the TARN database, and UKROC data. Section 251 permission was granted on the 10th January 2017 to collect confidential patient information for: NHS number, dates of birth and gender within the UKROC database in order to link the UKROC and TARN data-sets for the NCASRI programme. A proportion of patients that are captured in the TARN database, and require specialist in-patient rehabilitation on leaving the MTC, will not subsequently attend a specialist rehabilitation unit and thus not be captured by UK ROC. The aim of the feasibility component of the audit is to explore if HES, ONS and HRG data could provide more information on this small cohort of patients that need specialist in-patient rehabilitation but never receive this. This small cohort of patients are the cohort that will be the subject of this application for data and it is anticipated that this cohort of patients will be finalised by March 2018. For the feasibility component of the audit: HES data is required to: • Identify inpatient admissions to other in-patient services other than specialist rehabilitation. • Identify where patients (that required rehabilitation) went from MTCs but did not arrive at rehabilitation. • The search would seek admission and discharge dates for any inpatient treatment in the 6 months after leaving the MTCs. • Collecting dates of admission/discharge to non-specialist services in the 6 months after leaving the MTC will identify whether patients can be traced through HES data, and whether this has the potential to furnish useful information about the alternate care pathways for future audit cycles. • HES data will be processed through a Casemix Grouper to generate both the core HRGs and the unbundled HRGs for the records to determine reason for admission for patients. ONS data is required to: • Identify which patients may have died and thus did not arrive at rehabilitation. • The month and year of death would be obtained by searching ONS mortality data using the NHS number, gender and date of birth, to identify any patients who have subsequently died. Overall, the NCASRI programme aims to determine the scope, provision, quality and cost-efficiency of specialist rehabilitation services for adults with complex needs following major injury across England.


Project 2 — DARS-NIC-148269-0WSH2

Opt outs honoured: Y, N

Sensitive: Sensitive

When: 2016/04 (or before) — 2018/05.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report
  • MRIS - Scottish NHS / Registration
  • MRIS - Members and Postings Report

Benefits:

The LOLIPOP study is a prospective population cohort comprising ~18,000 Indian Asian and ~12,000 European white men and women living in West London. Consenting subjects complete a questionnaire (recording current, past and family medical history, cardiovascular risk factors, current medications, alcohol and cigarette consumption) have measurements of height, weight, waist hip ratio and blood pressure, as well as a 12 lead ECG. Fasting blood samples are collected for routing haematology and biochemistry (including blood lipids). Aliqouts of plasma, serum and DNA are stored for future analyses. Baseline assessments are complete. We now plan to undertake follow-up to identify incident cardiovascular events, using death certification, hospital discharge coding and local cardiac databases. We ask the Information Centre to flag research participants, and inform LOLIPOP investigators of participants who have died along with the cause of death. Flagging should continue for 20+ years. Possible cardiovascular events, including deaths, will be verified against source data where possible. This will be done through review of hospital, primary care and coroners records.

Outputs:

The LOLIPOP study is a prospective population cohort comprising ~18,000 Indian Asian and ~12,000 European white men and women living in West London. Consenting subjects complete a questionnaire (recording current, past and family medical history, cardiovascular risk factors, current medications, alcohol and cigarette consumption) have measurements of height, weight, waist hip ratio and blood pressure, as well as a 12 lead ECG. Fasting blood samples are collected for routing haematology and biochemistry (including blood lipids). Aliqouts of plasma, serum and DNA are stored for future analyses. Baseline assessments are complete. We now plan to undertake follow-up to identify incident cardiovascular events, using death certification, hospital discharge coding and local cardiac databases. We ask the Information Centre to flag research participants, and inform LOLIPOP investigators of participants who have died along with the cause of death. Flagging should continue for 20+ years. Possible cardiovascular events, including deaths, will be verified against source data where possible. This will be done through review of hospital, primary care and coroners records.

Processing:

No contact will be made with any individual(s) that could be identified from the information supplied, except as specified in the protocol and associated letters agreed between the Ealing Hospital NHS Trust, Uxbridge Road, Middx UB1 3HW and the NHS IC. Use of these Datasets are for the sole purpose set out above. The Data must not be shared with any other organisation or named individual not explicitly referred to within this agreement. If the information referred to herein is subject to an FOI or other request to share the Data, then agreement from the NHS IC must be sought before undertaking this. The Dataset must not be shared with any third party in the format in which it is provided to you by the NHS IC. Information tools derived from this Dataset will not be provided to any organisations without the specific consent of the NHS IC. Any publications derived from this Data by any party must be subject to ONS confidentiality guidance on the release of Health Statistics: http://www.ons.gov.uk/about/consultations/closed-consultations/disclosure-review-for-health-statistics---consultation-on-guidance/

Objectives:

Investigation of genetic and environmental factors underlying cardiovascular disease – the London Life Sciences Population (LOLIPOP) Study. The primary aims of the LOLIPOP study are to identify the genetic and environmental factors underlying the two fold increased risk of cardiovascular disease amongst UK Indian Asians compared with European whites. Data access is restricted to those named in section 7 of this agreement. Any changes will be notified to the NHS IC. The LOLIPOP study is a prospective population cohort comprising ~18,000 Indian Asian and ~12,000 European white men and women living in West London. Consenting subjects complete a questionnaire (recording current, past and family medical history, cardiovascular risk factors, current medications, alcohol and cigarette consumption) have measurements of height, weight, waist hip ratio and blood pressure, as well as a 12 lead ECG. Fasting blood samples are collected for routing haematology and biochemistry (including blood lipids). Aliqouts of plasma, serum and DNA are stored for future analyses. Baseline assessments are complete. We now plan to undertake follow-up to identify incident cardiovascular events, using death certification, hospital discharge coding and local cardiac databases. We ask the Information Centre to flag research participants, and inform LOLIPOP investigators of participants who have died along with the cause of death. Flagging should continue for 20+ years. Possible cardiovascular events, including deaths, will be verified against source data where possible. This will be done through review of hospital, primary care and coroners records.