A highly granular dataset of 7,156 Primary biliary cholangitis (PBC) hospital spell admissions containing 3,520 patients curated by PIONEER.

The dataset contains highly granular data including patient demographics, structured serial physiology, assessments, liver function tests, diagnostic codes (ICD-10 & SNOMED-CT), initial presentation, presenting symptoms, procedures (OPCS4 & SNOMED-CT), medical imaging, medications, consultations, and outcomes. The current dataset includes admissions from 30-03-2000 to 30-01-2024 but can be expanded to assess other timelines of interest.

Background: 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.

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.