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Risk and outcomes of coagulopathies in acutely unwell adults

Dataset
Version: 1.0.0
Patients admitted with a bleeding or clotting disorder. Granular care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped.

Summary

Citation:
Risk and outcomes of coagulopathies in acutely unwell adults

Documentation

Description:
Risk and outcomes of coagulopathies & arterial/venous thrombosis in acutely unwell patients Dataset number 12.0 Coagulopathies and bleeding disorders can reflect hereditary conditions such as Haemophilia or von Willebrand disease, be associated with other diseases such as liver conditions, sepsis, trauma or be iatrogenic, related to therapies or their side effects. Hospital associated venous thromboembolic (VTE) events remain common despite well known risk factors and effective prophylactic treatments. There are a number of blood biomarkers associated with coagulopathies, as well as genetic tests and treatments. This dataset focuses on the acute presentation of coagulopathies, including in people with known bleeding/clotting disorders and in people for present with a new clotting or bleeding events during an acute presentation. PIONEER geography The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. University Hospitals Birmingham NHS Foundation Trust is a Comprehensive Care Haemophilia Centre (CCC) and cares for a wide range of inherited bleeding disorders, including Haemophilia A and B, von Willebrand Disorder and other clotting factor and platelet disorders. UHB also has a mandated VTE risk and prescription prompt in the medical clerking, capturing risk factors and contraindications for anticoagulation. 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 admitted with coagulopathy or bleeding disorders (chronic or acute) from 2000 onwards. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, diagnosis of TE or bleeds, clotting parameters, D-Dimers, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, blood products, procedures), all outcomes. Available supplementary data: Matched controls; ambulance, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.
Is Part Of:
NOT APPLICABLE

Coverage

Spatial:
United Kingdom, England, West Midlands
Typical Age Range:
10-110
Follow Up:
OTHER
Physical Sample Availability:
NOT AVAILABLE
Pathway:
The West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average percentage of minority ethnic groups with Birmingham having a population which is >40% non-white. WM has a large number of elderly residents but Birmingham is one of the youngest cities in the UK. There is social deprivation and Birmingham’s population suffers with particularly high rates of illness; including cerebrovascular Disease, physical inactivity, obesity, smoking, hypertension, ischaemic heart disease & diabetes. There are also high levels of rare diseases, especially immunometabolic conditions. The patients included in this dataset are representative of this diverse population and also include a wide age-range. University Hospitals Birmingham NHS Foundation Trust (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 & 100 ITU beds. 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”. University Hospitals Birmingham NHS Foundation Trust is a Comprehensive Care Haemophilia Centre (CCC) and cares for a wide range of inherited bleeding disorders, including Haemophilia A and B, von Willebrand Disorder and other clotting factor and platelet disorders. UHB also has a mandated VTE risk and prescription prompt in the medical clerking, capturing risk factors and contraindications for anticoagulation. This dataset includes the patient journey from admission to hospital to outcome for patients with known clotting or bleeding disorders or who develop them as a result of illness, trauma or medical therapies/interventions. The data includes granular demography and co-morbidity, presenting symptoms and diagnoses, serial physiology and blood biomarkers, all investigations, all prescribed and administered treatments and outcomes. It can be supplemented with preceding and following health care contacts, to understand the risk for the acute admission and the subsequent impact on health after discharge. Although primarily secondary care, this dataset can be supplemented with ambulance and primary care data on request. PIONEER can also offer synthetic data, images and access to a secure Trusted Research Environment for analytics and AI. PIONEER can assist with analytics, model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.

Provenance

Origin

Purposes:
CARE
Sources:
EPR
Collection Situations:
IN-PATIENTS

Temporal

Accrual Periodicity:
QUARTERLY
Distribution Release Date:
2020-12-21
Start Date:
2015-01-01
End Date:
2020-11-18
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:
LESS 1 WEEK
Jurisdictions:
GB
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
  • OPCS4
  • SNOMED CT
Conforms To:
LOCAL
Languages:
en
Formats:
SQL

Observations

Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
16456 spells in this dataset from 01.01.2015 to 18.11.2020
16456
Count
2020-12-21