Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 227 days ago
Documentation
Associated Media:
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.
Coverage
Spatial:
United Kingdom,England,West Midlands
Typical Age Range:
10-110
Follow Up:
Other
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:
Secondary care - In-patients
Temporal
Accrual Periodicity:
Quarterly
Distribution Release Date:
21 December 2020
Start Date:
01 January 2015
End Date:
18 November 2020
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:
Not applicable
Data Controller:
University Hospitals Birmingham NHS Foundation Trust
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:
- OPCS4
- SNOMED CT
- ICD10
Conforms To:
LOCAL
Languages:
en
Formats:
SQL
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
16456 spells in this dataset from 01.01.2015 to 18.11.2020
16456
Count
21 December 2020