NHS hospital trusts like UCLH produce vast quantities of data.
UCLH cares for more than a million patients a year, generating a huge amount of information like results of blood tests and scans, prescription and treatment information.
This information together with UCLH’s new electronic healthcare record is an incredible resource for researchers looking at diseases and how to treat them.
If information can be linked up and pooled, researchers and doctors can look for patterns in the data, helping them to develop new ways of predicting, diagnosing and treating illness.
For example researchers can look at data to compare people with the same condition and see if there are any patterns in how they were treated and how they progressed.
Or researchers can look at large numbers of scans or test results to see if they can find quicker and more accurate ways of analyzing results. In this instance, researchers will usually use a computer programme to identify any patterns.
UCLH works in close partnership with UCL, and other organisations to conduct this research. This means that staff from UCLH, UCL, and other organisations carrying out research will handle data from the electronic healthcare records.
Data used in research is often anonymised by removing things like names, addresses and dates of birth, and sharing only numbers and statistics.
The Understanding patient data website has useful explanations of different levels of depersonalising and anonymising patient data.
We are collaborating with research funders, healthcare professionals, data guardians, patient representatives and others as part of Understanding Patient Data and in line with the principles stated at Understanding Patient Data, we support practices that:
· anonymise data wherever possible
· grant access to datasets only after an assessment by an independent review committee that the reason for using the data is appropriate
· provide only the minimum amount of data necessary to answer a research question
· store data securely
· require a legal contract to be signed before data can be transferred
· enable patients and the public to opt-out.