A population-based linked cohort of cancer and primary care data: A new source to study the management of cancer in primary care

Insight into the management of cancer in the primary care setting is pivotal to improve early recognition and survival of cancer patients. Much like Australia, GPs in the Netherlands are the first point of contact for those who experience health problems, including cancer symptoms. The GP Database of the PHARMO Database Network contains information relevant to the patients’ primary care pathway before and after diagnosis and referrals to specialists. The Netherlands Cancer Registry (NCR) contains information on the actual diagnosis of cancer and specific tumour and treatment characteristics. These databases have been linked to provide a valid source for future studies on the management of cancer in the primary care setting. This paper describes both databases, the linking process, the resulting cohort, data access, and provide an example of the utilisation of the data. The linkage established a large population-based cohort (NCR-PHARMO GP cohort) of 135,868 cancer patients. Data are available on demographics, tumour characteristics, primary health care use before and after cancer diagnosis including medication use, medical conditions, laboratory tests, and referrals. This data can be used for a number of different studies, for example, to study the diagnostic pathway in the primary care setting in order to identify possibilities for early recognition. This cohort provides rich data on the primary care management of cancer facilitating large-scale observational cancer research in the primary care setting. The patient-level linkage allows for long-term follow-up of cancer patients, with ongoing annual updates. Read full text
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