NHS Digital Data Release Register - reformatted
North Bristol NHS Trust projects
215 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
The Renal Association, UK Renal Registry - audit application — DARS-NIC-94250-L8W8T
Opt outs honoured: Yes - patient objections upheld, Identifiable, Yes (Section 251 NHS Act 2006)
Legal basis: Section 251 approval is in place for the flow of identifiable data, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), National Health Service Act 2006 - s251 - 'Control of patient information'. , Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 s261(7)
Purposes: (NHS Trust)
Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive
When:2018.06 — 2021.05. DSA runs 2019-04-01 — 2022-03-31
Access method: Ongoing, One-Off
Data-controller type: THE RENAL ASSOCIATION
Sublicensing allowed: No
- Hospital Episode Statistics Critical Care
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Outpatients
- Civil Registration - Deaths
- Civil Registration (Deaths) - Secondary Care Cut
- HES:Civil Registration (Deaths) bridge
The UK Renal Registry (UKRR) is part of the Renal Association, a not for profit organisation registered with the Charity Commission. The UKRR is among a number of organisations that form part of the The UK Renal Data Collaboration; whose main aim is to improve and standardise the scope and detail of data that is recorded in renal units. The UKRR is recognised as having one of the very few high quality clinical databases open to requests from researchers. The UKRR collects, analyses and reports on data from 71 adult and 13 paediatric renal centres. Participation is mandated in England through the NHS National Service Specification and the Chief Executive of each Trust is responsible for adherence to this contract.
The use of data is only permitted for use for audit purposes as part of the UK Renal Registry's audit function. Data will not be used for research purposes as this is not covered by the current s251 approval.
It was set up as a National Audit in 1995, reaching full coverage of the UK in 2007. Its primary purpose remains national audit. Initially the UK Renal Registry collected data on people receiving dialysis treatment or a kidney transplant, but extended its audit remit in recent years to include:
- All cases of acute kidney injury (AKI) in primary and secondary care from 2015 (following a level 3 Patient Safety
Alert issued by NHS England).
- All cases of advanced, pre-dialysis chronic kidney disease (stages 4 and 5) in secondary care from 2016 (at the
request of the National Clinical Reference Group)
Reporting of data to the UK Renal Registry is mandated in NHS Commissioning’s A06 Dialysis Specification.
The linkage with data provided by NHS Digital is to strengthen national audit of renal services by:
- enabling adjustment for case-mix in outcome comparisons (at the moment this is not possible as the UKRR’s co-
morbidity data are incomplete).
- establishing lateness of presentation with end-stage kidney disease requiring dialysis/ kidney transplantation
(this data is collected already by UKRR but completeness is less than 85% in 15 of 62 adult renal units in England in 2015).
- enabling hospital admissions and length of stay to be compared. Time spent in hospital is a major concern for
dialysis patients and varies considerably between renal units.
- enabling the reporting of cause of death, which is currently not completely returned by all centres.
- determining whether rates of AKI (and harm associated with AKI) vary from hospital to hospital and, if so,
whether this is explained by different rates of AKI and severity of AKI in the community vs in hospital.
These results will be published in the UK Renal Registry’s Annual Report, which is circulated to all renal units, their Trust Chief Executives, national kidney patient charities and the specialist commissioners. The AKI outcomes (which is relevant in primary and secondary care) will be reported quarterly to clinical commissioning groups. All outputs (aggregated with small numbers suppressed) will be made available on the Registry’s open-access website.
The use of data provided by NHS Digital is only permitted for use as part of the UK Renal Registry's audit function. Data will not be used as part of a research function as this is not covered by the current s251 approval.
Use of the HES and Civil Registration Mortality data to report centre-level differences in duration of admission to hospital for RRT patients: 1. Number of inpatient days (emergency) per prevalent transplant patient (median, days) 2. Number of outpatient visits for prevalent transplant patients (median, days) 3. Number of inpatient days (emergency) per HD patient (median, days) 4. Number of renal outpatient attendances for HD patients (median, days) 5. Number of non-renal outpatient attendances for in-centre HD patients (median, days) Use of the HES and Civil Registration Mortality data to report centre-level differences in rates and reasons for admission to hospital for RRT patients: 1. Definitive access procedure prior to HD start – timely presentation (%) 2. Definitive access procedures prior to HD start (%) 3. Definitive access procedures in the 12 months after RRT start (untimely presentation, HD & PD, %) 4. Multiple access procedures in the 12 months before RRT start (HD & PD, %) 5. Incident PD patients with a PD re-intervention procedure in the 12 months after PD start (%) 6. Access procedures in 2016 for prevalent dialysis patients (%) 7. Amputations in dialysis patients up to 5 years post dialysis start (%) Use of the HES and Civil Registration Mortality data to determine whether acute kidney injury occurred before or during admission to hospital: 1. Elective hospital admissions where AKI was hospital acquired (median, days) 2. Emergency hospital admissions where AKI was hospital acquired (median, days) 3. Hospital admissions (elective and emergency) with AKI reaching stage 3 (hospital and community acquired, per 100 admissions) 4. Hospital admissions with AKI reaching stage 3 that were coded with N17 diagnostic codes (%) Use of the HES and Civil Registration Mortality data to report the impact of acute kidney injury on hospital resources such as intensive care and length of stay: 1. Length of stay for emergency admissions with hospital-acquired AKI (median, days) 2. Length of stay for emergency admissions with community-acquired AKI (median, days)
Anticipated benefits include:
1. Use of the HES data to adjust for casemix in centre comparisons of survival and the attainment of standards (UKRR Annual Report, December 2018). UKRR anticipate that publication of these data and the quality improvement efforts that will follow will lead to fewer 'low' outliers for survival between renal units and a gradual improvement in survival on dialysis or with a kidney transplant. It is likely to be 5 years before UKRR see the reduction in centres with significantly lower survival and a population benefit in terms of survival.
2. Use of the HES data to report centre-level differences in rates, duration and reason for admission to hospital (UKRR Annual Report, December 2018). The UKRR anticipate that publication of these data and the quality improvement efforts that will follow will lead to reduced variation in rates of admission to hospital and length of stay for people on dialysis or a kidney transplant. It is likely to be 5 years before the UKRR see the reduction in variation in hospital admissions and length of stay.
3. Use of the HES data to determine whether acute kidney injury occurred before or during admission to hospital (Reports to Commissioners and NHS Trusts, July 2018). The UKRR anticipate that the publication of these data and the quality improvement efforts that will follow will lead to reductions in rates of AKI and mortality associated with AKI over 3-5 years.
4. Use of the HES data to report the impact of acute kidney injury on hospital resources such as intensive care and length of stay (Reports to NHS England, Commissioners and NHS Trusts, July 2018). The UKRR anticipate that the publication of these data and the quality improvement efforts that will follow will lead to reduced healthcare spending associated with AKI over 3-5 years.
5. Use of the ONS data to better understand the causes of death in people developing acute kidney injury or end-stage kidney disease (Reports to NHS England, Commissioners and NHS Trusts, July 2018). The UKRR anticipate that the publication of these data and the quality improvement efforts that will follow will lead to reduced mortality associated with AKI and end-stage kidney disease over 3-5 years.
No personal identifiable information (as agreed in the UKRR’s s251 permissions) is released for audit or analysis.
All analyses involving HES and ONS data will be undertaken by substantive employees of the Renal Association employees who are employed in the Renal Registry function. Record level data will therefore not be released to any external organisation.
All outputs will be at the aggregate level with small numbers suppressed in line with HES analysis guide.
All processing of the ONS data will be in line with the ONS terms and conditions.
National Audit and Quality Improvement: end-stage kidney disease - dialysis and transplantation
Every year, the UK Renal Registry publishes an open access report detailing quality of care at the renal unit level. If this linkage is approved, the UKRR-HES-ONS linked data will be included in some of these chapters, particularly:
1. To enable adjustment for case-mix between centres in analyses of survival and attainment of national standards (requires HES)
- This will be presented in the relevant chapter of the UKRR Annual Report (i.e. co-morbidity, survival, anaemia,
bone mineral metabolism, transplant outcome). In the co-morbidity chapter, the co-morbidities present in
new and existing dialysis/ transplant patients will be presented in a descriptive way. In the other chapters, case-
mix will be added as a variable that can be adjusted for in the multi-variable models, so the output does not
change much in appearance or format.
- These open access annual report chapters include survival and attainment of quality indicators by renal unit,
which allows renal unit performance to be compared by clinical teams, commissioners and patients.
- When a renal unit is an outlier for survival, they are written to by UKRR and have to provide evidence that their
Chief Executive and Commissioner have been informed and that an investigation has taken place. Being able to
adjust for case-mix will make the UKRR more confident that the outliers are due to practice differences rather
than case-mix differences.
2. To report variation in hospital admission rates between centres (requires HES)
- Patients on dialysis tell us that time spent in hospital has a major impact on their quality of life. UKRR would like
to include a new annual report chapter that presented the differences between centres in rates of admission to
hospital and length of stay in hospital. Hospitalisation data would be presented un-adjusted initially and then
adjusted for case-mix, including co-morbidity derived from HES data.
3. To explore differences in cause of death between centres (requires ONS)
- Mortality is high for patients on dialysis and following kidney transplantation, with cardiovascular and infection
events being the major contributors. At the moment, UKRR can only compare all-cause mortality between renal
units and there are significant differences. As well as being able to adjust for case-mix (see above), being able to
explore differences in cardiovascular and infection-related deaths would help focus quality improvement efforts
aimed at primary or secondary prevention.
These annual report chapters are also written as 'plain English' summaries to make them more accessible to patients and the public. In 2017, these were published within 2 weeks of the main UKRR Annual Report on the UKRR website. Depending on when the HES and ONS data are linked, the additional information could be included in the 2018 UKRR Annual Report.
National Audit and Quality Improvement: Acute Kidney Injury (AKI)
In addition, AKI data will be reported to NHS England, commissioners and NHS Trusts. The UKRR's work on AKI is currently being managed through the Think Kidneys AKI National Programme with NHS England (www.thinkkidneys.nhs.uk/aki/). NHS England invested £2m in the National Programme to improve patient safety and is waiting for the linkage to HES and ONS to enable the data to be used to reduce harm from AKI. The UKRR-HES-ONS data will also be used to drive national quality improvement through the Kidney Quality Improvement Partnership (www.thinkkidneys.nhs.uk/kquip/). AKI is a key component of the KQuIP regional quality improvement days with clinical teams, commissioners and patients.
Reporting of the AKI data currently takes the form of:
1. An open access website that summarises AKI reporting to UKRR (www.thinkkidneys.nhs.uk/aki/).
2. A report to NHS England and commissioners on rates of reporting, rates of AKI and rates of death associated with AKI.
3. A CCG-level report sent to CCGs
At present the UK Renal Registry are not able to distinguish between AKI that happens in the community and in hospital. Linkage to HES will enable reporting of rates of:
- community and hospital AKI
- mortality associated with AKI in the community and in hospital
- length of stay associated with AKI.
Linkage to ONS would also allow the UK Renal Registry to report causes of death associated with AKI.
Depending on when the HES and ONS data are linked, the additional information could be included in the AKI reports from mid-2018 UKRR.
Meetings and conferences
UKRR presents audit data at a number of national meetings including:
1. The Renal Association's UK Kidney Week - attended by nephrologists, scientists, other members of the multi-
professional team and some patients
2. The British Renal Society's Annual Conference - attended by nephrologists, scientists, other members of the
multi-professional team and some patients
3. The National Kidney Federation's annual conference - attended by patients from all over the UK
As a part of the Kidney Quality Improvement Partnership, the UKRR holds regional meetings with clinical teams, patients and commissioners where the regional data is presented and used to focus quality improvement initiative. In 2017, regional meetings were held in the West Midlands, Yorkshire and Humber and the East Midlands. Four more regional meetings are planned for 2018.
All data flows (including the organisation, the level of data and pseudonymous nature of the data) have been approved by the HRA CAG for Section 251 support, so all flows are covered by this. In relation to the UKRR-NHS Digital data flows:
- Personal identifiable data for patients in the cohort will be sent securely (via SFTP or NHS.net) from UKRR to NHS Digital. Personal identifiable information will be limited to: Date of Birth, Gender, postcode, NHS number and a Study ID (UKRR Number)
- NHS Digital will then send back to UKRR the agreed clinical and mortality data with patient identifiers removed and a study ID attached (UKRR number)
- An extract of linked data up to 2016/17 will be sent at the start of the Data Sharing Agreement. A further dissemination of linked 2017/18 data will be sent to the UKRR when available. There will be no updates to the cohort.
The data is held on UKRR servers in two separate Data Centres. Only substantive employees of the Renal Association working within the Renal Registry function have access to this data. The data centres host the hardware and provide connectivity.
1. AIMES host the physical hardware in a Secure Datacentre. AIMES have ISO27001 certification (UK8000045), NHS IG Toolkit Compliance and are a G-Cloud Assured Supplier. The Virtual Machines are backed up to a backup server in a secondary location at the same address on a daily basis. These backups are encrypted with access to the keys limited to the Renal Registry Systems Team.
2. North Bristol Trust host the physical hardware in a purpose built secure centre. The data centre is a controlled environment and access to the building is monitored and access to both the building and to the different security zones is logged. Physical access to this room is restricted by hospital security protocols to senior IT staff and substantive employees of the Renal Association who are employed in the Renal Registry function. Any access to the servers is logged. The computer server has its own tape backup system, with the tape rotated on a daily basis by the hospital IT staff. These tapes are encrypted and stored along with the hospital system backups, in the hospital’s fire proof safe.
The UKRR’s legal basis allows routine linkage with 4 organisations/ types of dataset:
1. NHS Blood and Transplant
2. Public Health England (for infections)
3. NHS Digital for Hospital Episode Statistics
4. NHS Digital for Office for National Statistics
When HES and ONS are linked to the UKRR data they will also be linked to the items provided by NHS Blood and Transplant and Public Health England.
NHS Blood and Transplant send UKRR the personal identifiers for people who have been waitlisted for a kidney transplant or received a kidney transplant in the UK. The UKRR then looks for matches on its database and sends personal identifiers for matches back to NHS Blood and Transplant. NHS Blood and Transplant then returns the personal identifiers and the agreed clinical data back to UKRR. UKRR produce an extract for those identified and returns the patient identifiers and the clinical data back to NHS Blood and Transplant.
The UKRR sends personal identifiers for people on it database to Public Health England. Public Health England then looks for matches in its database of infections and returns the personal identifiers and the clinical data to the UKRR for these cases.
HES data will be used to determine variables such as:
- the presence of co-morbid conditions
- number, duration and reason of hospital admission
- whether an episode of acute kidney injury occurred before or during a hospital admission
- whether patients known to UKRR have had dialysis access surgery or interventions
- whether patients known to UKRR have had other relevant surgery, such as cardiac and orthopaedic surgery and
- number and outcome of pregnancies
ONS data (date and cause of death) will be linked to UKRR data. The legal basis for the receipt of the ONS date is s42(4) of the Statistics and Registration Service Act. A commissioning letter from NHS England has been provided to UKRR to obtain the relavant HES and ONS data to carry out the audit function. UKRR already collects date of death from renal IT systems, but the ONS data are based on the official record.
The UKRR have requested over 10 years of data due to monitoring trends over long periods of time, with the two most important being:
1. Incident patients on renal replacement therapy, i.e. people starting dialysis or receiving a first kidney transplant
in the UK.
2. Survival of new and existing patients on renal replacement therapy.
The UKRR need to include patients going back to 1997 to have sufficient numbers/stability for the long term (10 year) survival estimates. As end-stage kidney disease is a relatively rare condition – only ~100 new cases per million of the population each year – there can often be a degree of uncertainty / noise in observations from one year to the next. It is therefore useful to see trends over a long time. End-stage kidney disease also has a high mortality rate, so few people will survive to 10 years, especially in the older age groups. This affects the certainty of estimates for long term survival (a key metric for people with end-stage kidney disease) further.
The UKRR also holds data from Scotland and Northern Ireland. Any linkages to this data will be performed separately to the NHS Digital linkage and will not involve the sharing of NHS Digital data with Scotland or Northern Ireland. The linkages to central NHS held data will only involve the transfer of data for patients recruited in those nations, so for example there will be no data transferred to NHS Digital for patients recruited in an NHS Scotland institution. NHS Digital data will not be disseminated to Scotland for the purpose of this data linkage.
The UKRR is part of The Renal Association, and will be the only part of The Renal Association that will process any data provided by NHS Digital. All employees of the UKRR are substantive employees of The Renal Association. Only these substantive employees of The Renal Association will access the data provided by NHS Digital within the Renal Registry audit function.
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.
Project 2 — DARS-NIC-381891-X5K3X
Opt outs honoured: N, Y ()
Legal basis: Health and Social Care Act 2012, Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007
Sensitive: Non Sensitive, and Sensitive
When:2016.09 — 2016.11. DSA runs —
Access method: One-Off
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Outpatients
- Hospital Episode Statistics Critical Care
- Office for National Statistics Mortality Data (linkable to HES)