The British Ophthalmological Surveillance Unit (BOSU) – supporting rare eye disease research using health records
Studies carried out using the BOSU system collect information to improve the care of people with rare eye conditions. The information collected is provided by doctors directly and only to the study team and is taken from medical records that already exist.
The studies carried out using the BOSU do not involve any direct contact by researchers with individual patients, nor do they involve any change to the care the patients receive in any way.
BOSU studies go through very thorough checks by a number of organisations to confirm the information required cannot be collected in any other way, that the study will follow all mandatory processes and standards for high quality research. The BOSU system ensures high standards of information governance and that confidentiality is protected at all stages and only the study team has access to the data collected, which is held in a secure computing environment in compliance with GDPR. There is special pathway for approving these studies to allow collection of data without specific consent, as it is vital that the information collected is complete if the results are to be useful and reliable.
The NHS uses medical records for audit or research to improve future health and care. Hospitals and health professionals make a note when someone does not want their health records to be used for audit or research (known as dissent). This can be for all research projects or for specific research projects. So if a patient (or their legal guardian) does not wish to have their data used in a study through BOSU research their information would not be passed on by their doctor. Patients can also inform their doctor at any point in their care that they do not wish their data to be used and if already reported the doctor can withdraw a patient’s information from the study.
The General Medical Council’s principles of good medical practice state that all doctors should take prompt action to prevent the compromising of patient safety, dignity or comfort. These principles are observed in research using the BOSU surveillance system.
Information on what NHS England may do with your personal data for patients in England can be found here and how data can be used for research can be found here.
Information on what NHS Scotland may do with your personal data for patients in Scotland is here.
Information on what NHS Wales may do with your personal data for patients in Wales is here.