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Clinical characteristics of hospitalised primary biliary cholangitis patients

Dataset
Version: 1.0.0
Patients with hospitalised Primary Biliary Cholangitis (PBC) from 2000 to date. Granular care pathways. Deeply phenotyped. Serial physiology, blood markers, outcome data. Demography, multi-morbidity, investigations and treatments.

Summary

Citation:
Clinical characteristics of hospitalised primary biliary cholangitis patients

Documentation

Description:
Background Primary biliary cholangitis (PBC) is a rare, autoimmune cholestatic liver disease that puts patients at risk of life-threatening complications. PBC is primarily a disease of women, affecting approximately one in 1,000 women over the age of 40. With an estimated total prevalence in the UK of ~3.9 per 10,000 of the population, equating to around 19,175 people in England, the survival of PBC patients is significantly worse than the general population if left untreated. Many patients are diagnosed after multiple acute care admissions, with tummy pain, jaundice or scarring of the liver. The diagnosis can still be missed here, putting patients at increased risk of liver complications and even death. This dataset focuses on describing the demographic, clinical and laboratory characteristics of PBC patients. PIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. EHR. 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 & an expanded 250 ITU bed capacity during COVID. 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”. Scope: All patients from 2000 onwards, curated to focus on Primary Biliary Cholangitis (PBC). Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (admissions, wards and discharge outcomes), presenting complaints, all physiology readings (pulse, temperature, blood pressure, respiratory rates, oxygen saturations), all sample analysis results, all prescribed & administered treatments, along with chemotherapy data and all outcomes.

Coverage

Spatial:
United Kingdom, England, West Midlands
Typical Age Range:
18-110
Follow Up:
1 - 10 YEARS
Physical Sample Availability:
NOT AVAILABLE
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:
  • ACCIDENT AND EMERGENCY
  • IN-PATIENTS
  • OUTPATIENTS

Temporal

Accrual Periodicity:
QUARTERLY
Distribution Release Date:
2022-02-21
Start Date:
2000-03-30
End Date:
2022-02-01
Time Lag:
OTHER

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:
ICD10
Conforms To:
LOCAL
Languages:
en
Formats:
SQL

Enrichment and Linkage

Derivations:
Not Available

Observations

Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
5,625 admissions between 30-03-2000 and 01-02-2022
5625
Count
2022-02-21