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Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago

Specialist bronchiectasis management and acute care presentations to hospital

Dataset

Documentation

Description:
Bronchiectasis is a chronic lung condition characterised by the permanent dilation and damage of the airways, leading to frequent respiratory infections, persistent cough, and significant morbidity. Acute exacerbations of bronchiectasis are critical events that often necessitate hospital care, representing a period of heightened risk for patients and a substantial burden on healthcare systems. This NIHR Respiratory Translational Research Collaboration-associated dataset of 51,166 bronchiectasis admissions from 17k unique patients offers a comprehensive collection of hospital presentation data related to acute bronchiectasis episodes, capturing key clinical details, patient demographics, treatment interventions, and outcomes. The data includes also includes, serial physiology, assessments, diagnostic codes (ICD-10 & SNOMED-CT), initial presentation, presenting symptoms, procedures (OPCS4 & SNOMED-CT), imaging, microbial cultures, prescriptions & medications, ward locations and outcomes. The current dataset includes admissions from 01-01-2000 to 29-05-2024 but can be filtered accordingly. Geography: The West Midlands (WM) has a population of 6 million & includes a diverse ethnic & socio-economic mix. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & > 120 ITU bed capacity. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. Data set availability: Data access is available via the PIONEER Hub for projects which will benefit the public or patients. This can be by developing a new understanding of disease, by providing insights into how to improve care, or by developing new models, tools, treatments, or care processes. Data access can be provided to NHS, academic, commercial, policy and third sector organisations. Applications from SMEs are welcome. There is a single data access process, with public oversight provided by our public review committee, the Data Trust Committee. Contact pioneer@uhb.nhs.uk or visit www.pioneerdatahub.co.uk for more details. Available supplementary data: Matched controls; ambulance and community data. Unstructured data (images). We can provide the dataset in OMOP and other common data models and can build synthetic data to meet bespoke requirements. Available supplementary support: Analytics, model build, validation & refinement; A.I. support. Data partner support for ETL (extract, transform & load) processes. Bespoke and “off the shelf” Trusted Research Environment (TRE) build and run. Consultancy with clinical, patient & end-user and purchaser access/ support. Support for regulatory requirements. Cohort discovery. Data-driven trials and “fast screen” services to assess population size.

Coverage

Spatial:
United Kingdom,England,West Midlands
Typical Age Range:
0-150
Follow Up:
0 - 6 Months
Pathway:
Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.

Provenance

Origin

Purposes:
Care
Sources:
EPR
Collection Situations:
  • Secondary care - Accident and Emergency
  • Secondary care - In-patients

Temporal

Accrual Periodicity:
Quarterly
Distribution Release Date:
21 August 2024
Start Date:
01 January 2000
End Date:
28 May 2024
Time Lag:
Less than 1 week

Accessibility

Access

Access Service:
Trusted Research Environments (TRE) are built using Microsoft Azure services and hosted in the UK to provide research teams a safe, secure and agile environment which allows users to quickly analyse, interpret and form an enriched view of primary care information through a range of integrated datasets. Health data collated from multiple sources is ingested into a secure data lake which will then allow subsets of data to be made available to research teams on approval of a data request. Once approved a customer specific TRE is made available with a standard set of leading analytical tools from Microsoft including Azure Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale data warehouses). Specific tools can be provided at an additional cost over the standard platform data access charge and the PIONEER team will work with you to determine your exact needs. Access to the TRE is managed using the latest virtual desktop technology to provide a safe and secure end-user experience. By utilising leading edge design PIONEER are able to create TREs rapidly to enable us to service any customer requirement.
Access Request Cost:
www.pioneerdatahub.co.uk/data/data-services-costs/
Delivery Lead Time:
1-2 months
Jurisdictions:
GB-ENG
Data Controller:
University Hospitals Birmingham NHS Foundation Trust
Data Processor:
NOT APPLICABLE

Usage

Data Use Limitations:
General research use
Data Use Requirements:
Project-specific restrictions
Resource Creators:
This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)

Format and Standards

Vocabulary Encoding Schemes:
  • LOCAL
  • OPCS4
  • SNOMED CT
  • ICD10CM
Conforms To:
LOCAL
Languages:
en
Formats:
SQL, CSV, JSON, XML

Observations

Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
17015 patients with diagnosed Bronchiectasis ICD10 code J47
17015
Count
11 July 2024