May 05, 2017
We believe that everyone should be offered the opportunity to participate in research that may improve their health outcomes or the health outcomes of their family and friends.
Patient electronic health records (EHR) contain a vast amount of information that holds the key to medication getting to the right patients faster, making medications cheaper. Everybody deserves the opportunity to get the best treatment available and this is possible through patients like yourself agreeing to take part in research and by making your anonymised data records available.
Information on taking part in research can be found via the research for the future project run by the National Institute for Health Research (NIHR). Research is at the heart of the NHS and it helps to discover the best ways to prevent, diagnose and manage illnesses. The medicines and treatments used today are only available thanks to volunteers taking part in research studies in the past.
Research requires access to computerised information from your electronic health record (EHR). The data from your electronic health record is anonymised and searches are run by research staff over an anonymised data set using a tool called FARSITE. Only demographics such as your age range, medication and ethnicity are visible to the researcher. The researcher cannot identify an individual from this data as all personal details (name, address, postcode and full date of birth) are obscured and protected using a computer process called pseudonymisation.
Your data never leaves the protected NHS N3 network. GP data collected and processed for FARSITE is transmitted across the NHS (N3) network, using high grade encryption, by the local NHS data host, the GP System Supplier or Apollo Medical Systems Ltd.
If you would like further information on how you can get involved in research in different research areas, please speak to your GP. Patients have been involved in some incredible areas of research which have changed the way in which patients are treated. Be a part of a change for the better in the world by taking part in research.
FARSITE is a rapid ‘search and find’ tool designed to preserve patient confidentiality. FARSITE provides a safe, convenient and effective way for your GP to control the recruitment of patients into clinical research, whilst allowing NHS-based researchers to run complex searches over anonymised population level health record data.
Patients in participating GP practices should be informed of the potential uses of their data, in line with the fair processing requirement of the first DPA principle.
We recommend that GP practices follow best practice guidance on fair processing, and consult their CSU/VIADUCT HEALTH/Trust/NHS host organisation if unsure. Basic patient demographics (including a pseudonymised NHS number) and clinical event data (i.e. read-coded data and numerical values, but not free text) are collected.
Your data remains secure and confidential at all times. Only your GP will ever be able to see your identifiable data. The searches that research staff run will locate GP practices where patients matching a criterion are based. Your GP will be able to identify you from these searches and invite you to take part in research.