Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Associated Media:
https://lida.leeds.ac.uk/wp-content/uploads/2017/01/Data-Flow-Protocol-V3.pdf
https://lida.leeds.ac.uk/comprehensive-patient-records-2/
https://datadictionary.nhs.uk/xml_schema_constraints/cancer_outcomes_and_services_data_set_xml_schema_constraints.html
https://lida.leeds.ac.uk/comprehensive-patient-records-2/patient-reported-outcome-measures/
https://lida.leeds.ac.uk/wp-content/uploads/2017/01/Data-Flow-Protocol-V3.pdf
https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/comprehensive-patient-records-for-cancer-outcomes/
https://www.health.org.uk/funding-and-partnerships/programmes/augur-an-open-source-interactive-cancer-analytics-web-app
https://lida.leeds.ac.uk/adam-glaser/
https://www.researchgate.net/publication/336720985_Comprehensive_Patient_Records_CPR_Study_Workstream_5_Protocol_and_Methods_-_Patient_reported_costs_of_living_with_and_beyond_cancer
https://www.data-can.org.uk/datasets
Description:
The data is derived from linked primary, secondary and tertiary care electronic health records and participant survey responses. Data is de-identified at source (Leeds Teaching Hospitals NHS Trust (LTHT) and ResearchOne) and linked using matching pseudonymous digests that are re-pseudonymised upon linkage by University of Leeds IT to produce irreversibly pseudonymous data that is processed into a research dataset. The data relates to the medical history of cancer patients prior to cancer, during their cancer diagnosis and treatment, and following their long-term outcomes, and the medical history of matched non-cancer patients that form a comparator cohort.
The data relates to 431,352 patients in the UK that LTHT have a ‘legitimate patient relationship’ with and that were determined by LTHT to have had a cancer diagnosis between 2004 and 2018 or be a matched non-cancer patient. Where available, data from ResearchOne provides primary care information for these patients. Where the patients were invited to participate in a patient reported outcomes measures survey (PROMS), this status is recorded. Where the patient returned a consented PROMS, the PROMS data will also be available once it has completed the extract, transform and load process.
The dataset is currently 5.7 GB and further ResearchOne and PROMS data is anticipated. The dataset is arranged as a relational database, with tables linking on the patient level by a pseudonymous digest. Each table is a comma separated values (CSV) file and relates to an event type, such as prescription cost, address history or diagnosis. All patients have an entry (row) in the demographics table; the number of times a patient has an entry in the other tables depends on how many events of that type were recorded for the patient.
The dataset is split into two files, each with similar table structure; the main dataset contains all patients and the PROMs dataset contains only those in the PROMs cohort (for whom additional PROMs data will be added). Each table has a re-pseudonymised digest field, “Digest2” and an indicator as to whether the patient has data from ResearchOne available, “TPP_Linked” (0 or 1). Additional fields per table are defined in Table 1. No fields contain sensitive information.
Contains patients in the UK that LTHT have a ‘legitimate patient relationship’ with and that were determined by LTHT to have had a cancer diagnosis between 2004 and 2018 or be a matched non-cancer patient.
Coverage
Spatial:
United Kingdom,England,Yorkshire and The Humber,Leeds
Typical Age Range:
0-100
Follow Up:
Unknown
Pathway:
Primary and Secondary care
Provenance
Origin
Purposes:
Study
Collection Situations:
Primary care - Clinic
Temporal
Accrual Periodicity:
Static
Distribution Release Date:
12 January 2018
Start Date:
01 January 2008
End Date:
12 January 2018
Time Lag:
Variable
Accessibility
Access
Access Rights:
In Progress
Access Service:
The Data Access will be from securely linked primary- and secondary-care data,
non-identifiable patient information from GP surgeries, community care units and
hospital records repository, eg Leeds Teaching Hospitals NHS Trust (LTHT) , Data
Request and access process.
Access Request Cost:
This has not yet been defined and will be developed on a case by case basis
initially.
Delivery Lead Time:
Not applicable
Data Controller:
Leeds Teaching Hospital Trust
Data Processor:
Leeds Institute for Data Analytics
Usage
Data Use Limitations:
- General research use
- Genetic studies only
- Research-specific restrictions
- Research use only
- No linkage
Data Use Requirements:
- Collaboration required
- Ethics approval required
Resource Creators:
Leeds Teaching Hospital Trust (LTHT) are the data controller
Professor Geoff Hall and Professor Adam Glaser are the Principal Investigators.
Format and Standards
Vocabulary Encoding Schemes:
ICD10
Languages:
en
Formats:
- text/csv
- text/xml
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
CPR population
40000
count
20 October 2017