Comprehensive Patient Records for Cancer Outcomes
The Comprehensive Patient Records research dataset relates to the medical history of cancer patients prior to cancer, their diagnosis and treatment, long-term outcomes, and medical history of matched non-cancer patients that form a comparator cohort. 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.
Webpage:
https://www.healthdatagateway.org/dataset/a337845e-1dde-445b-90cf-91d8b825e3a5
Licence:
Name: HDR UK Innovation Gateway Access
Tags:
cancer population leeds secondary care data primary care research
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