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ECHO is a data curation project that uses data linkage and routinely-collected healthcare data to improve the evidence-based clinical practice beyond the evaluation from clinical trials. The ultimate goal is to improve the Effect of Cancer and its treatment on Health Outcomes (ECHO) of people. With improving treatments and earlier diagnosis more people than ever survive cancer diagnosis and treatment and attention shifts from achieving a cure to improving long-term outcomes and minimising side-effects.
The focus of this project is to use real-life evidence from routinely-collected data to evaluate and improve outcomes of people affected by prostate cancer and treated with radiotherapy. A recently-published open access data linkage study from our team shows how data linkage can supplement clinical trials in evaluation of radiotherapy and provide important and cost-effective mechanisms for long-term follow-up of patients with prostate cancer.
NPL’s data curation work also focusses on improving reproducibility and transparency of cancer epidemiological research based on routinely-collected data. We have produced an ontology-based algorithm to reliably identify prostate cancer cases in primary care data. This algorithm can facilitate cohort studies that use primary care data for observational research aimed to improve health and healthcare of men diagnosed with prostate cancer. Prostate cancer was a first case study and the team is working on application of this method to other cancers and chronic diseases.
This case study uses several sources of healthcare data: data from Randomised Control Trials (RCTs) is supplemented with data from national registers such as the Cancer Registry, the National Radiotherapy Dataset (RTDS), and mortality data from the Office of National Statistics (ONS). Furthermore, we have data sharing and research governance approvals to use data from the Royal College of General Practitioners Research and Surveillance Centre (RCGP RSC), a nationally representative network database of primary care records. We also use routinely collected secondary care data (Hospital Episode Statistics – HES).
This work is ongoing and we are keen to work with as many people as possible. Please contact us if you would like to know more or want to discuss the challenges in your work environment.
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