Good TREs work

Birmingham Women's And Children's NHS Foundation Trust projects

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

British Paediatric Surveillance Unit - Surveillance of Congenital Ichthyosis in Neonates (BPSU-SCIN) (ODR1920_247) — DARS-NIC-656867-F3Q3L

Type of data: information not disclosed for TRE projects

Opt outs honoured: Identifiable (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (NHS Trust)

Sensitive: Sensitive

When:DSA runs 2020-07-07 — 2024-07-06

Access method: One-Off

Data-controller type: BIRMINGHAM WOMEN'S AND CHILDREN'S NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. NDRS Congenital Anomalies

Expected Benefits:

HI and CM, although rare, present significant public health issues particularly during the first weeks of life. These babies may remain on intensive care for prolonged periods with associated risk and cost. Due to its rarity, professional expertise is limited and currently families rely on each other for advice via the Ichthyosis Support Group.

It is unknown how many babies are born with ichthyosis and how many die. Accurate information is needed in order to improve care for these children and families, reducing misconceptions about the disease, variation in practice, and avoidable deaths.

The information from our study will support an application to NHS England for a Highly Specialised Service and may help us understand why some babies die. The information generated will also be shared with affected families via the ISG, with professional groups via academic publications and with international colleagues via the European Reference Network for Rare and Undiagnosed Skin Disorders (ERN-Skin), in which the applicants are active participants.

Outputs:

The anonymous data will be analysed and the results will be published on the British Paediatric Surveillance Unit (BPSU) website, and shared with medical professionals, ichthyosis sufferers and NHS bodies concerned with improving services for patients.

Processing:

The BPSU system sends a monthly email to all paediatricians including neonatologists. This should pick up most if not all new-born babies with severe ichthyosis born during the 2 year study period. However, babies who are still-born or who die immediately after birth may not be seen by a paediatrician. After exploring various ways to identify missing cases (BWCNHSFT) approached the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) for help.

As advised by NCARDRS it was proposed to send them limited identifiers (NHS number and DOB), from the cases reported to (BWCNHSFT). The legal basis for releasing the data to NCARDRS would be the NCARDRS CAG s251 approval and GDPR articles 6(e), 9(h) and 9(i).

Meanwhile NCARDRS would extract cases identified by them and born during the 2 year period, using the relevant ICD10 codes (Q80.2, Q80.4, Q80.8, Q80.9). They would then compare the two datasets and remove from their dataset any cases already identified by the study team.

From their final dataset (that is cases missed by the study team), NCARDRS would provide the following information to the study team: date of birth, date of death if applicable, sex, ethnic group, postcode (sector level), NHS number (or equivalent), hospital number and hospital name. NCARDRS would then send this information to the study team, released in accordance with ODR protocols. The legal basis for this transfer would be the study CAG s251 approval and the relevant GDPR articles 6(e) and 9(j) (see section 5).

All transfers would be made over a secure file system (NHS SEFT or CyberArk).

Access to NHS Digital Online Portal — DARS-NIC-11544-S1L0R

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant (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 - 'Other dissemination of information', Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii)

Purposes: No (NHS Trust)

Sensitive: Non Sensitive, and Non-Sensitive

When:DSA runs 2019-07-19 — 2021-02-01 2017.06 — 2024.11.

Access method: Ongoing, System Access
(System access exclusively means data was not disseminated, but was accessed under supervision on NHS Digital's systems)

Data-controller type: BIRMINGHAM WOMEN'S AND CHILDREN'S NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. HES Data Interrogation System
  2. Hospital Episode Statistics Admitted Patient Care
  3. Hospital Episode Statistics Accident and Emergency
  4. Hospital Episode Statistics Outpatients
  5. Hospital Episode Statistics Critical Care
  6. Hospital Episode Statistics Accident and Emergency (HES A and E)
  7. Hospital Episode Statistics Admitted Patient Care (HES APC)
  8. Hospital Episode Statistics Critical Care (HES Critical Care)
  9. Hospital Episode Statistics Outpatients (HES OP)

Objectives:

Birmingham Children’s Hospital is a large provider of local, regional and national care for Children, including several nationally commissioned services.

It is intended to process the data available through HDIS to support three activities;
• Challenging practice, both at the hospital and across the local economy, through the production of benchmarks for length of stay and outcomes, conversion rates from emergency department attendance, and exploring variation in care over time

• Contributing to the whole health economy planning processes through strategic analysis of patterns of paediatric activity, including the impact of re-configurations occurring at other sites which are decreasing their contribution to the provision of paediatric care, and implementation of the Keogh review recommendations.

• Exploring the strategic future possibilities for Birmingham Children’s Hospital, in particular describing the likely levels of population need as it is planned to build a new facility for Birmingham in 2023/4. To make sure that this is balanced against the needs of the local, regional and national populations that is served.

Given the specialist nature of the activity that are delivered, and the wide geographies that patients travel from, HDIS gives the unique ability to design queries that can be appropriately filtered for demographic and clinical care factors, allowing BCH NHS FT to produce standardised information. In particular, it allows querying of subgroups of age/residence at a granularity not available in national datasets. This is of particular importance in a context focussed only on treating children.

The majority of the intelligence that are produced using the HDIS system is used internally, in discussion with senior leaders and clinicians at the trust. The summary information produced from HDIS is also used in discussions with other organisations, including commissioners. Before data is presented or shared, it is audited as fully compliant with HSCIC recommendations on small numbers, diagnoses, and geographies. The trust uses standard filter rules in HDIS to remove inappropriate data, and all data is subsequently audited against a template before use.

Occasionally, data will be used from the HDIS system in reports on paediatric health that are released into the public domain. Again, these will be audited for compliance against HSCIC standards for protecting patient anonymity. No data included in these reports is at a granularity that would not be available through a freedom of information request route. Raw data is never extracted from HDIS, and no data below summary granularity is shared with partners outside of these terms.

All outputs produced will be aggregate with small numbers supressed in line with the HES analysis guide.

Data will only be used for purposes relating to the provision of healthcare or the promotion of health in line with the requirements of the Health and Social Care Act 2012 as amended by the Care Act 2014.

Yielded Benefits:

Since the last submission, there is now evidence that access to the NHS Digital Portal has supported effective planning of orthopaedic services for children and young people, being used in outline business cases for two organisations to ensure effective distribution of resources and safer healthcare for children and young people, as well as being received by the STP. Within the Birmingham and Solihull United Maternity and New born Pathway (BUMP) initiative, there is evidence that data has been used to inform more strategic placement of community hubs, and in particular has laid the foundations for addressing inequalities by ensuring that local maternity care is available in areas of highest deprivation and birth rates. Specific use cases identified during 2016/17 were: 1. Exploration of regional asthma emergency admission activity for 0-14 year old children living in the West Midlands metropolitan county. National data demonstrates that several areas in the West Midlands have higher than expected rates of paediatric admissions. BWC NHS FT has undertaken several initiatives to improve the care pathway and discharge of patients with this condition. However, the variation remains. Analysis of internal hospital datasets cannot show us the picture across the region, because it only captures patients admitted to a single site. Using the NHS Digital Portal, it has been possible to audit services and engaged with commissioners to explore variation in referrals between general practices, and across areas of the city. It is intended to use the NHS Digital Portal to filter activity to specific lengths of stay, ages and diagnostic categories, but being able to present a population need, rather than a provider delivered view. It is anticipated that this information is presented in a standardised rate form, grouped to remove small numbers, and with smaller practices being clustered to again protect the identity of small patient groups. 2. Retrospective analysis of paediatric emergency department attendances and conversion rates through winter. Paediatric services, in line with adult services, have had substantial pressure through the last winter. BWC NHS FT has had several periods of special cause variation in admission rates. The NHS Digital Portal will enable us to correlate whether this activity represented true increases in activity, or shifts in activity from other providers. This will inform future planning, enabling to identify whether prevention, capacity or health seeking behaviour is the root cause, thus ensuring that it can demonstrate better preparedness in future periods of greater pressure. 3. Healthcare needs analysis of surgical activity within the West Midlands. Due to changes in clinical governance thresholds, retirement of senior surgeons and re-configurations of several services within the region, demand on surgical pathways has proved volatile and hard to forecast. It is intended to use the NHS Digital Portal to demonstrate how surgical flows are changing, and whether there are particular geographies where there are substantial shifts in the management of children and young people. The intelligence produced through the system will enable and ensure a balance is used for services across the region to meet demand, and are able to have constructive discussions within the health economy on how best to meet the population health need. 4. BWC NHS FT has committed to extend its role as an advocate for better paediatric public health, health and social care for children, young people and families. The NHS Digital Portal enables to act within the wider health and social care system to challenge on health inequalities for children. It is intended to use the system to look at variations in attendance, conversion and treatment experience for children and young people, and use this to make the case for necessary system wide improvements. For example, recently using the NHS Digital Portal to examine attendance rates by social deprivation and ethnicity, by age group and emergency department. This allowed to demonstrate different local behaviours, and that the apparent geographical preference suggested by internal data was not validated when examined at a population level Other use cases during 2016/17; BWC NHS FT designed a complex query within the NHS Digital Portal, supported by a customised upload into the secure environment of localised population projections. Using a linkage between geography, age and year, BWC NHS FT created forward population projections that in turn were linked to birth activity (described using the NHS Digital Portal's ability to mirror the national SUS publication metadata filters), to produce a localised estimate of births across Birmingham and Solihull. This was appropriately pseudonymised and obfuscated, and a download requested. The retrieved data was converted into a dataset and map that can inform service planning. BWC NHS FT repeated the analysis for a wider geographical footprint to explore the interactions with neighbouring localities, to ensure that cross boundary flows were understood. The outputs were used to; 1) Inform capacity planning, and workforce planning, to secure a stable transformation plan across the Birmingham and Solihull United Maternity and Neonatal Partnership (BUMP), one of the key national maternity transformation pilots 2) Explore variation of provision in care between areas 3) Plan the location of future local hubs, ensuring these are mapped to highest areas of anticipated demand 4) Consider the future pattern of acute provision, including opportunities to consolidate or restructure care. The benefits from the 2016/17 use cases are: 1. (Regional Asthma emergency admission) Access to the NHS Digital Portal gave the trust the ability to investigate a variation in the quality of care, and to advocate for change. Children and young people benefited from the CCG acting on practices that excessively high rates, and ensured that learning from well performing practices was shared. The outcome of this should be reduced harm to children, and reduce risk of adverse outcomes. 2. (Winter Paediatric Attendances) Other intelligence sources would only have helped the trust consider its own position. Access to the NHS Digital Portal provided a way to take a place based approach, and consider need across the health economy, more fairly reflecting the needs of citizens. Through this approach, the Trust was able to advocate for effective provision through the busiest winter of emergency activity experienced in the region, and ensure that access to services (e.g. as measured through the 95% target) was achieved across the year. 3. (Healthcare Needs Assessment) Required healthcare intelligence could be accessed more quickly, and as a consequence, more rapid progress could be made on planning future services. In 2017/18, use cases were: 1. Substantial piece of work to explore the reconfiguration of specialist orthopaedic services at a regional and national level in response to the withdrawal from provision by a major provider. The provider was responsible for receiving regional and national referrals, and the dataset allowed examination of patient flows and explore capacity, waiting times and GP preferences across the relevant geographies. It also supported future modelling of service demand, particularly through the unique ability to link and model within the secure environment prior to aggregation and export. 2. Similarly, there continues to be a reliance on the dataset access to support system transformation around the local maternity system. In this context, BWC NHS FT have used the dataset to produce a population level view of maternity demand and to help the system plan to address health inequalities. The place based view enabled the production of the data in a timely fashion, and also made the case for change around the location of community hubs away from the sites of secondary and tertiary care delivery.

Expected Benefits:

Pilot access has been granted to HDIS through 15/16. During this time, BCH have been able to achieve many benefits which would not be possible without continued access to the HDIS database. For example, summary information has been extracted from HDIS to inform a forecasting model that provides a forecast of future surgical activity within the region forwards to 2021, with an onward look to 2030. This is being used to design future services, ensuring are sufficiently productive and well placed to deliver against demand in future years.

BCH have on-going project which is exploring benchmarking possibilities against peer comparators to describe variations in paediatric care.

BCH uses a programme management approach that understands benefits as the measurable improvements resulting from a set of outcomes that are enabled by the organisations changing capabilities.

The capabilities expected from HDIS is to give the organisations are;
• Access to national datasets on inpatient, outpatient and emergency activity that enables the trust to take a population (rather than point) view of healthcare delivery and performance
• The ability to create custom queries that filter by demographic and clinical factors to extract information on incidence, care pathway and outcomes
• Ability to produce healthcare needs assessment on targeted conditions or patient groups
• Ability to produce healthcare needs assessment for wider paediatric populations.
The outcomes this will enable include;
• Improvements in planning across the health economy for children and young people
• Higher priority to health inequalities that affect children and young people
• Better planning for the population level needs of children and young people
• Reduction in variation of healthcare experience between different groups of the population
• Improved forecasting of demand on services, and a more responsive healthcare system

Benefits for these outcomes fall in the short and long term. For example, HDIS will support planning of the future configuration of paediatric services within the region, but this is unlikely to be fully realized until new estate becomes available in 2022.

However, short term measurable benefits also exist;
• Report on variation in emergency care will trigger initiation of a project in collaboration with commissioners to explore variation in asthma care experience, particularly exploring the artificial barriers that primary/secondary care introduce into the system (now completed September 2015)
• Reduction in variations of length of stay between BCH and other organisations for key areas, including elective surgical patients and oncology treatments. (now completed October 2015)
• A description of the emergency attendance behaviours around paediatrics that will inform the child health network in Birmingham for its planning of a response to the Keogh review. (due September 2016)
• A healthcare needs assessment of changes in paediatric attendance patterns through winter to inform contribution of organisation to the sustainability and transformation planning needs (due August 2016)
• Upstream study looking at maternal presentations and anticipating impact on births and neonatal flows (Due July 2016)

Together, it is intended that the benefits of use of the HDIS system by BCH will be an outcome for children, young people, families and the health and social care system of a well planned system of paediatric care, that delivers excellent care, and continual improvement. It is intended that HDIS will support making this care accessible, adaptive and resilient to the levels of population need within local, regional and national populations.



Outputs:

All outputs are produced to a standard specification, which includes aggregation of small number data in line with the HES analysis guide. In some cases, this includes withholding fields where they provide information about other parts of the final information set.

HDIS is a flexible system which allows for the ongoing production of healthcare needs assessments, benchmarking of services, and support to the development of regional and national strategy towards the prevention and treatment of paediatric diseases.

Specific use cases identified are:

1. Exploration of regional asthma emergency admission activity for 0-14 year old children living in the West Midlands metropolitan county. National data demonstrates that several areas in the West Midlands have higher than expected rates of paediatric admissions. BCH has undertaken several initiatives to improve the care pathway and discharge of patients with this condition. However, the variation remains. Analysis of internal hospital datasets cannot show us the picture across the region, because it only captures patients admitted to a single site. Using HDIS, it has been possible to audit services and engaged with commissioners to explore variation in referrals between general practices, and across areas of the city. It is intended to use HDIS to filter activity to specific lengths of stay, ages and diagnostic categories, but being able to present a population need, rather than a provider delivered view. It is anticipated that this information is presented in a standardised rate form, grouped to remove small numbers, and with smaller practices being clustered to again protect the identity of small patient groups.

2. Retrospective analysis of paediatric emergency department attendances and conversion rates through winter. Paediatric services, in line with adult services, have had substantial pressure through the last winter. BCH has had several periods of special cause variation in admission rates. HDIS will enable us to correlate whether this activity represented true increases in activity, or shifts in activity from other providers. This will inform future planning, enabling to identify whether prevention, capacity or health seeking behaviour is the root cause, thus ensuring that it can demonstrate better preparedness in future periods of greater pressure.

3. Healthcare needs analysis of surgical activity within the West Midlands. Due to changes in clinical governance thresholds, retirement of senior surgeons and re-configurations of several services within the region, demand on surgical pathways has proved volatile and hard to forecast. It is intended to use HDIS to demonstrate how surgical flows are changing, and whether there are particular geographies where there are substantial shifts in the management of children and young people. The intelligence produced through the system will enable and ensure a balance is used for services across the region to meet demand, and are able to have constructive discussions within the health economy on how best to meet the population health need.

4. BCH has committed to extend its role as an advocate for better paediatric public health, health and social care for children, young people and families. HDIS enables to act within the wider health and social care system to challenge on health inequalities for children. It is intended to use the system to look at variations in attendance, conversion and treatment experience for children and young people, and use this to make the case for necessary system wide improvements. For example,recently using the HDIS system to examine attendance rates by social deprivation and ethnicity, by age group and emergency department. This allowed to demonstrate different local behaviours, and that the apparent geographical preference suggested by internal data was not validated when examined at a population level

The majority of aggregate information (already compliant with HSCIC small numbers standards etc.) is only shared with specific individuals relevant to a project or workstream.

Occasionally, specific relevant and appropriately grouped outputs with be shared with other organisations.

Certain projects will produce custom indicators of performance. These are used for the purposes of quality improvement, either internally, or in discussion with other organisations.

All outputs will be aggregate with small numbers supressed in line with the HES analysis guide.

Data accessed via the HDIS database will not be used for any commercial purposes. No publishing of the findings of HDIS queries are made through journals. Academic output is not a requirement for funding of HDIS within the organisation.

Processing:

The application is for online access to the HDIS system.

BCH NHS FT have a medical consultant in public health who is sole user authorised to use the HDIS system, whose skillset includes SQL query writing and advanced statistics, as well as undertaking the complex joins required to process data online. A multi-step processes is used within the HDIS virtual environment to ensure that the majority of processing is completed within the HSCIC virtual environment. Linkages of HSCIC datasets only occurs within this single virtual environment.

Patient level data is never extracted from the raw data files within the system, nor are small number values.

Once the query within the virtual machine is complete, extract data is put into an excel spreadsheet, keeping an audit trail of the query undertaken and the summary extracted for review by our internal governance team, as well as external bodies such as the HSCIC.

Once extracted from the system, data is stored in a secure NHS network environment with user access control to the files. Local processing is used to format or visualise the data (e.g. bar charts). A final manual audit check is undertaken on the data to confirm that it is compliant with HSCIC standards, for example confirming it is not possible to derive obfuscated values from column totals etc.

The data is never transferred into any cloud based systems, nor analysed outside of the local environment. For certain analyses, data is linked locally to commonly available summary datasets – for example, using the LSOA field within the HDIS dataset to link to a specific deprivation indicator. This is only applied at the summary data level.

The data is not processed by any additional individuals, and is only released from the sole user once processing of the information is complete.