NHS Digital Data Release Register - reformatted

Salford Royal NHS Foundation Trust projects

109 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

🚩 Salford Royal NHS Foundation Trust was sent multiple files from the same dataset, in the same month, both with optouts respected and with optouts ignored. Salford Royal NHS Foundation Trust may not have compared the two files, but the identifiers are consistent between datasets, and outside of a good TRE NHS Digital can not know what recipients actually do.

Programmes of analysis and service improvement - AQuA — DARS-NIC-07141-L2S0B

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant, No (Does not include the flow of confidential data)

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

Purposes: Yes (NHS Trust)

Sensitive: Non Sensitive, and Non-Sensitive

When:DSA runs 2018-05-03 — 2021-05-02 2017.09 — 2021.03.

Access method: Ongoing

Data-controller type: SALFORD ROYAL NHS FOUNDATION TRUST, NORTHERN CARE ALLIANCE NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. Hospital Episode Statistics Accident and Emergency
  2. Hospital Episode Statistics Admitted Patient Care
  3. Hospital Episode Statistics Outpatients
  4. Hospital Episode Statistics Admitted Patient Care (HES APC)

Objectives:

This is a renewal, extension and amendment of NIC-330478-X4Y4R]

AQuA supports long-term health improvement programmes, many of which require years of sustained and targeted work to demonstrate improvement. In order to provide longitudinal analysis of the position before intervention and to establish whether planned improvements have transpired, continued access to HES data is required.

AQuA Organisational Context

AQuA was established in 2010 by the Strategic Health Authority, as a: not for profit; membership body; which is part of Salford Royal NHS Foundation Trust (SRFT). Advancing Quality Alliance is funded by 72 member organisations that include: Foundation Trusts, Mental Health Trusts, and Clinical Commissioning Groups. AQuA’s core membership is based in North West England (covering a population of c. 7.5 million) with some cross-border members from Yorkshire (covering a population of 0.75 million). Membership from other health or social care organisations would be considered. Members pay an annual fee and draw down services as appropriate to their local improvement needs. All of the membership income is used to invest in member organisation quality improvement.

AQuA provides services in a number of ways :-
- Through a membership arrangement with individual NHS and Social Care organisations (who pay a fee for access to AQuA’s service and regionally based expertise).
- on an ad-hoc basis (per service offered) to NHS and Social Care organisations
- In respect of income received from grant bodies (bid to be awarded via charity, non-profit making, covering costs only).
All of the above carry charges which are charged on a cost recovery basis.
AHSNs may also commission work to support their health objectives. If tendered, AQuA may bid for aspects of this work which align to our organisation business objectives. AQuA would be bidding on a not-for-profit basis.

AQuA’s vision is ‘to support AQuA’s members and customers to transform the health and quality of healthcare of people they serve’.

AQuA’s hosting arrangements with SRFT are to provide the statutory accountability for AQuA to operate as an NHS organisation; AQuA does not have independent legal status. The relationship is therefore to provide governance and service infrastructure. AQuA is not therefore a commercial arm of SRFT.

Data
The HES data is requested to enable the delivery of services by AQuA as outlined below, and will not be used for any other purpose.
Within this application “NHS and Social Care” is used as shorthand to include NHS or Social Care providers, commissioners, Local Authorities (in relation to delivering their public health duties only), CSUs, GP Practices and national NHS and Social Care organisations. It also includes private sector providers of health, in relation to the services provided by those private sector healthcare providers under NHS or Social Care contract.

AQuA requires the HES data to be held for multiple years to provide longitudinal analysis to identify trends and year-on-year comparison. The nature of the data analysis will change over the life of the data extract based on the specific area being reviewed i.e. the latest healthcare issue e.g. re-admissions, mortality, Sepsis etc.

The services broadly fall in to two categories – a programme of work for a particular year which is established as part of AQuA’s strategic plan which is agreed with its members; and a grant or development programme which may generate the following year’s programme of work. Quality improvement programmes may be developed based on AQuA research to establish ‘what the data says’.

To support AQuA Programmes.
Mortality

Aqua use NHSD published SHMI data to support mortality analysis but this renewal does not relate to that. Aqua use HES data to support mortality reduction programme, particularly regarding the level of the use of coding, crude mortality rates at a granular level etc.
The specific processing objectives for processing in respect of this application are:
In-depth Mortality Reviews
AQuA works with provider trusts (and their partners) to provide a ‘whole-system’ review of their Governance, Systems, Processes and Information Management. As part of this review, AQuA undertakes detailed analysis of HES data to ascertain if the trust is an outlier in any of the scores of ‘indicators’ that AQuA examines. AQuA also undertake themed analysis (e.g. “Patient Flow”) to see if there is any pattern in potential challenges of a similar nature across several aspects of care (e.g. A&E wait times, times of admission, episodes per spell, bed occupancy rates, delayed discharge). The mortality reviews assess a multitude of data fields from publically held data as well as local data sources. This is triangulated and explored further with organisational/economy-wide interviews and focus groups.
The service may be accessed by member organisations, but also by non-member NHS and Social Care organisations.

The Advancing Quality (AQ) programme is AQuA’s flagship offering having a significant impact in terms of improving the quality of care and reduce unwarranted variation. Key outcomes include: a reduction in avoidable mortality, reduced length of stay, financial savings etc. The AQ programme is funded by north-west CCGs and north-west acute trusts and specialist mental health providers that participate in the programme. It is operated in ten hospital conditions and one in mental health. These include metrics along whole pathways in areas such as diabetes and COPD.

Advancing Quality:
• Focuses on issues that matter locally, underpinned by robust provider and commissioner involvement
• Adopts and spreads best practice
• Creates high quality, benchmarked information to help local systems understand their current performance and health inequalities, and to inform the development of improvement strategies whilst tackling unwarranted variation
• Uses information to develop shared priorities based on outcomes that are in greatest need of improvement and comparing that information with peers to drive up further improvements

Patient Safety
AQuA has an extensive Patient Safety programme which innolves ad hoc information analysis to support improvement programmes. Recent examples are:
a) an analysis of Sepsis admissions at one hospital compared to regional and national rates
b) a comparison of in-hours vs out-of-hours mortality rates
c) peri-natal mortality
d) non-elective admissions by day of week

Yielded Benefits:

All 6 of the Trusts that AQuA have carried out an in-depth mortality review for in the past have a lower SHMI value than when AQuA started working with them and 5 of the 6 trusts are currently in the "As expected" range. Crude in-hospital mortality for the North West of England shows a long-term downward trend. 2009/10 - 2.7% 2010/11 - 2.5% 2011/12 - 2.4% 2012/13 - 2.5% 2013/14 - 2.3% 2014/15 - 2.4% 2015/16 - 2.3% 2016/17 - 2.4% The North West SHMI has reduced from 1.06 [Jul 12 – Jun 13], to 1.05 [Jul 13 – Jun 14], 1.03 [Jul 14 – Jun 15] although has increased to 1.05 in the latest release [Jul 15 – Jun 16]. It is anticipated that the work will continue to support this downward trend over the next four releases of SHMI. Greater Manchester Stroke Pathway: In 2017, AQuA analysed stroke activity In Greater Manchester and compared it to the rest of England. Greater Manchester had implemented a regional stroke pathway to improve treatment and outcomes and the analysis was a retrospective review of the activity from 11/12 – 16/17. The purpose of the review was to evaluate the effects of the reorganisation. This review compared the Greater Manchester region with London (which had a similar stroke pathway) and the rest of England. The initial proposal for the stroke reorganisation estimated that it could save 50 lives a year. While stroke mortality declined across all regions over that period, it declined slightly faster in Greater Manchester, resulting in an estimated reduction of between 14-30 deaths annually in Greater Manchester compared to the expected number of deaths if the mortality declined at the average rate for England over that period. Annually, this total of 75 is broken down thus: 2012/13 19 2013/14 14 2014/15 (3) 2015/16 30 2016/17 15 Safety: It is too early to define tangible benefits of this programme. The work supports the national patient safety initiative "Sign up to Safety" data and benefits will be targeted at areas within the ‘Safety Wall’. Further information on this initiative is available on the NHS England website at https://www.england.nhs.uk/signuptosafety/.

Expected Benefits:

Mortality
The aim is to reduce the levels of mortality for acute trust members for whom AQuA conduct an in-depth review. This will be measured by improved SHMI banding and crude in-hospital mortality rates.
All 6 of the trusts that AQuA have carried out an in-depth mortality review for in the past have a lower SHMI value than when AQuA started working with them and all 6 trusts are currently in the "As expected" range.

Crude in-hospital mortality for the North West of England shows a long-term downward trend. The North West SHMI has reduced from 1.06 [Jul 12 – Jun 13], to 1.05 [Jul 13 – Jun 14], 1.03 [Jul 14 – Jun 15] and 1.04 in the latest release [Jul 15 - Jun 16]. It is anticipated that the work will continue to support this downward trend over the next four releases of SHMI.
Advancing Quality [AQ]

Two studies have been undertaken on the long-term effects of the AQ Programme. HES data was used under an application made by the authors. In future, Advancing Quality Alliance (AQuA) would wish to carry out this work ourselves – as described above.

Reduced Mortality with Hospital Pay for Performance in England:
N Engl J Med 2012; 367:1821-1828 http://www.nejm.org/doi/full/10.1056/NEJMsa1114951
This study used HES data to analyse mortality for 134,435 patients admitted to hospitals participating in the Advancing Quality programme. The authors (Sutton et al) used difference-in-differences regression analysis to compare mortality 18 months before and 18 months after the introduction of the program with mortality in two comparators: 722,139 patients admitted for the same conditions to the 132 other hospitals in England and 241,009 patients admitted for six other conditions to both groups of hospitals.

Long-Term Effect of Hospital Pay for Performance on Mortality in England:
N Engl J Med 2014; 371:540-548
http://www.nejm.org/doi/full/10.1056/NEJMoa1400962

This study used HES data to analyse the long-term effects of Advancing Quality. The authors (Kristensen et al) studied the 24 hospitals in the northwest region that Advancing Quality Alliance are participating in the programme and 137 elsewhere in England that Advancing Quality Alliance are not participating. Using difference-in-differences regression analysis to compare risk-adjusted mortality for an 18-month period before the program was introduced with subsequent mortality in the short term (the first 18 months of the program) and the longer term (the next 24 months).

Greater Manchester Stroke Pathway
The programme will improve patient care for patients who have had a stroke. The aim of the programme is to reduce mortality rates – 50 fewer patients dying per year when fully implemented (2016/17 c.f. 2012/13). The aim is also to reduce average length of stay from the baseline of 2012/13.

Safety.
It is too early to define tangible benefits of this programme. The work supports the national patient safety initiative "Sign up to Safety" data and benefits will be targeted at areas within the ‘Safety Wall’. Further information on this initiative is available on the NHS England website at https://www.england.nhs.uk/signuptosafety/

Outputs:

Outputs comprise charts, data tables and written reports. Charts draw data from aggregated counts, not record-level data. Outputs show a range of metrics for an individual organisation, over time and in comparison to peers and national rates. Small numbers are supressed in line with the HES analysis guide.
Outputs are only available for members. This is controlled via a secure members’ area of AQuA’s website which is accessed via an individual log-on/password.
Record-level data is not shared with third parties.

AQuA do not use the data, or its outputs, to inform marketing activities and, therefore, do not use it to actively ‘target’ the marketing of AQuA’s products and services to any organisation e.g. GP Practice, CCG, Trust.
Research will not be used to establish a protocol for a clinical trial.
The following paragraphs detail the specific outputs for each of our programmes listed above.
Mortality
The Mortality Review report identifies positives, challenges and opportunities as well as a series of recommendations. These are themed around the five key drivers of clinical care, reliable care, documentation & information, leadership and end of life care. It is recognised that a higher than expected Mortality rate may well be a warning flag for other underlying quality and safety concerns.
At least one report per annum is produced.
AQuA's Quarterly Mortality Report provides information on a wide range of mortality-related indicators. Time-series charts for each member organisation (acute trusts only) are shown, together with comparative information relating to the latest time-period; this comparative information benchmarks trusts to others in the region and to national rates.
The Quarterly Mortality Report is published in February, May, August and November of each year.
Advancing Quality
AQuA works with clinicians to agree a common set of quality standards which define and measure good clinical practice. Robust data collection and reporting supports clinical teams to benchmark themselves against peers and neighbours and identify opportunities for improvement. Collaborative learning events and other networking forums allow teams to come together and share best practice and experience. This is complimented by an incentives framework that includes public reporting and Commissioning of Quality and Innovation (CQUINs) monitoring.

Data from HES will be used to analyse, compare, and benchmark healthcare providers participating in the AQ programme with providers in the rest of England. Indicators such as length of stay, re-admissions, mortality, complication rates and other health-related outcomes will be studied with the aim of evaluating and understanding the impact of the AQ programme.
This is an ongoing programme with no specific end-date

Greater Manchester Stroke Pathway
A dashboard (spread-sheet) will be produced to show how Greater Manchester compares to London and the rest of England. This will include crude mortality rates, length of stay and transfers. This will show high-level rates only and not provide access to patient-level data. The dashboard will be produced every four months.

Safety
The key areas for improvement relate to the "Sign up to Safety" ‘safety wall’ i.e. Venous Thromboembolisms (VTEs), Healthcare Acquired Infections (HCAIs),Pressure Ulcers (PUs), Acute Kidney Injury (AKI), Maternity, Medication Errors, Deterioration in Children, Falls, Handover and discharge, Nutrition and hydration.
The Quarterly Safety Report pulls together metrics from a broad range of data sources that are indicators of safety. Data from HES is used and includes such metrics as re-admission rates. The publication of a broad range of benchmarked data will improve patient safety by driving organisations to look for improvements in areas where they are performing less well.

The Quarterly Safety Report is published in March, June, September and December of each year.

Processing:

HES Data are held on a secure SQL server within AQuA’s host organisation’s data centre (Salford Royal Foundation Trust). AQuA construct additional working tables to aid subsequent analysis e.g. a “Spells” table, a “Diagnosis Mentioned” table, a list of “Operation Codes” table.

Subsequent analysis predominately provides aggregated counts of data in line with the criteria set in the query. Some data analysis requires the extraction of a filtered set of record-level data. This is for internal purposes only; no record-level data leaves AQuA, only aggregated counts with small numbers suppressed in line with the HES analysis guide.

All Aqua staff are on substantive posts with Salford Royal the data is only analysed by substantive employees of Salford Royal.

Means, Medians, Quartiles and Deciles are calculated and presented on the charts / in the tables.

Data processing will take place within England/Wales. Data outputs will be available within England/Wales.

Project 2 — DARS-NIC-148412-BC33Q

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y ()

Legal basis: Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007 , Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012)

Purposes: ()

Sensitive: Sensitive, and Non Sensitive

When:2017.09 — 2017.02.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report

Objectives:

The data supplied will be used only for the approved medical research project - MR739: Rates of Cognitive Changes Preceding Death in Later Life

MR1002 - Correlation of Genotype & Phenotype in Myositis — DARS-NIC-147776-69CX7

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - consent provided by participants of research study, Identifiable (Consent (Reasonable Expectation))

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(2)(c), Health and Social Care Act 2012 – s261(2)(c)

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2022-01-06 — 2023-01-05 2017.06 — 2017.02.

Access method: Ongoing, One-Off

Data-controller type: THE UNIVERSITY OF MANCHESTER, UNIVERSITY OF MANCHESTER

Sublicensing allowed: No

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Members and Postings Report
  4. MRIS - Flagging Current Status Report

Objectives:

The data supplied by the NHSIC to Salford Royal NHS Foundation Trust will be used only for the approved Medical Research Project identified above

Yielded Benefits:

Details of yielded benefits will be provided in a subsequent Agreement.

Expected Benefits:

Findings will be disseminated to clinicians through journal publication and presentation at specialist meetings (e.g. annual UKMYONET meeting). Clinician implementation of findings can lead to improved clinical outcomes for patients.

Implementation of previously identified clinical association with myositis specific autoantibodies (e.g. Jo-1 association with interstitial ling disease) has led to improved patient outcomes.

Improved knowledge of cancer/mortality associations with myositis specific auto antibodies can improve early cancer diagnosis rates and allow implementation of preventative mortality measures in patients with myositis.

All patients with myositis (estimated 10,000 people in the UK) will benefit from potential early cancer diagnosis and implementation of measures to prevent early mortality.

Outputs:

A paper has been accepted for publication (in-print) to Rheumatology. This paper utilised cancer data generated from NHS Digital.
- Oldroyd, A., Sergeant, J., New, P., McHugh, N. J., Betteridge, Z. E., Lamb, J., Ollier, W., Cooper, R. & Chinoy, H. The temporal relationship between cancer and adult onset anti-transcriptional intermediary factor 1 antibody positive dermatomyositis. Rheumatology. 16 Sep 2018

Several conference abstracts, utilising data from NHS Digital, have been accepted, published and presented at international conferences:
- American College of Rheumatology annual scientific meeting 2017 – “Anti-TIF-1 Antibody Positivity Is Associated with a Five-Fold Increase in Cancer Risk in the Idiopathic Inflammatory Myopathies”
- British Society of Rheumatology annual conference 2016 – “The Risk of Premature Death of both Cancer Associated and Non-Cancer Associated Myositis in UK Adult-Onset Myositis Patients is Significantly Raised Compared to the General Population”
- Annual European Congress of Rheumatology 2015 – “The Standardised Mortality Rate in UK Adult-Onset Myositis Patients is Seven Times Higher than the UK General Population”


Further planned analysis will take place to delineate the risk of death premature death and cancer associated with myositis specific autoantibodies. Mortality data from NHS Digital will be utilised. Findings will be submitted for publication in high-impact open-access journals.

All outputs, past and present, contain aggregated data in line with NHS Digital guidelines.

Processing:

Under previous iterations of this Data Sharing Agreement, Salford Royal NHS Foundation Trust (SRFT) provided files of identifiers (Patient’s forenames, surnames, date of birth, NHS Number) to the Health and Social Care Information Centre (now known as NHS Digital) for flagging. Prior to this Agreement, a total of 746 individuals had been flagged.

Since 2008 NHS Digital has provided linked mortality and cancer data along with the associated participant's forename, surname, date of birth and NHS number to SRFT.

SRFT stored the data on a server in the Clinical Science Building on encrypted, password protected Trust computers which can be only accessed at SRFT.

This data is accessed only by the study coordinator. A pseudonymised version of this dataset (i.e. containing no patient identifiers other than study ID numbers) is transferred to the University of Manchester where it can be accessed by researchers working on study analysis.

Under this Agreement, an additional 550 patients will be sent to NHS Digital and will contain NHS Number, full name, date of birth and pseudonymised study ID. These participants will be flagged and added to the MR1002 cohort that NHS Digital currently hold. Reports containing mortality, cancers, and exits will be sent to SRFT assigned to pseudonymised study ID only and applied to the database at SRFT.

The data received from NHS Digital can only be accessed by authorised individuals within SRFT and the University of Manchester for the purposes described, all of whom are substantive employees of one of those organisations.

Blood samples from recruiting centres are posted to University of Manchester (UoM) where the samples are processed and stored. UoM carries out genetic analysis on the extracted DNA and then batch transfers the extracted plasma to University of Bath for the purpose of performing antibody analysis. No data from NHS Digital is transferred to the University of Bath.

The data has been and will continue to be used to calculate mortality rate in myositis population and compared to norms. Cancer rates were studied in myositis population and compared to norms as well as comparison in between myositis sub groups in order to answer questions such as: ‘Do more people with dermatomyositis develop cancer as a result of cancer associated myositis (CAM) when compared with patients with polymyositis?’ and ’'Is cancer more common in patients with the Tiff 1 antibody in blood sample when compared to absence of tiff 1 antibody?’ Therefore, cancer data from NHS Digital has been linked with antibody data from research blood analysis within the University of Manchester.

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).