May 24, 2018
The Department of Health calls for every patient to have access and opportunity to research that may be of particular relevance to them – FARSITE supports GPs to do this. This is also a requirement in the NHS Constitution Handbook. Researchers use the FARSITE view during the initial stages of recruitment to see how many patients match a trial protocol; the numbers of patients matching each criterion, or the numbers belonging to each consenting GP practice. When the researcher is ready to recruit for a trial they can use FARSITE to contact selected GP practices.
The principle behind FARSITE is to maintain patient confidentiality by limiting the information given to researchers and only allowing GPs to decide whether their patient should be contacted. A researcher inputs the protocol for a clinical trial and this is then matched to eligible patients who can be contacted by their own GP, via an automated system. The researcher doesn’t have access to individual patient records, details of who meets the criteria for a protocol is only available to the patient’s GP practice. This is what we call local ownership and local control. So as the GP you are always the data controller.
FARSITE has been reviewed by the National Information Governance Board (NIGB) and the system is currently in use in over 250 practices across the North of England. All identifiable records are seen only by the GP, as the data controller. Researchers see only de-identified records, as the datasets are held in two different files, stored securely on the N3 NHS network. If you decide to sign up to FARSITE, data is extracted on a monthly basis. We have technical safeguards in place to stop out of date data being used in recruitment. We don’t want unnecessary work for GPs or for the wrong patients to be contacted.
The FARSITE Recruitment view gives control for trial recruitment to the GP. Email prompts are sent to the practice when a new trial is available, or practice staff can log into FARSITE Recruitment and check to see if new studies are available to them. They can then use FARSITE Recruitment to review study documentation and the re-identified patients when it is convenient. FARSITE Recruitment is flexible; you can simply opt out of a study if you don’t wish to participate. As part of the recruitment process, the researcher creates an invitation letter template for the study and the necessary documentation: consent form, information sheet, study protocol, and ethics approval. These are made available to the GP at the point of study collection to make selecting and contacting patients as simple as possible.
FARSITE is a fantastic tool for research studies, it is good for looking for feasibility and is able to pinpoint patients. It is really exciting for health professionals and has lots of potential.
Dr Sheila McCorkindale - GP
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. NorthWest EHealth recommends 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. The demographics dataset and the clinical events dataset are stored separately.
Data is never collected for patients who have opted out of electronic record sharing and have a read code flag on their record.
The data collection process is automated and refreshed once a month. Data can be collected directly from a GP practice using accredited third party Apollo Medical Systems Ltd, indirectly from a GP system supplier (EMIS, Vision) or via the local NHS data host (CSU/VIADUCT HEALTH/trust/NHS host organisation) if data is hosted centrally.
Data is transmitted to FARSITE and stays within the NHS firewall on the N3 (NHS) network at all times. Data is immediately encrypted before it is transferred securely to the host environment at Salford Royal Foundation Trust.
FARSITE has been reviewed by the National Information Governance Board (NIGB) and the system is currently in use in over 250 practices across the North of England. All identifiable records are seen only by the GP, as the data controller.
Please contact your local Clinical Research Network to discuss using FARSITE in your practice.