Brain Health Data Pilot
Research type
Research Database
IRAS ID
342803
Contact name
William Whiteley
Contact email
Research summary
Brain Health Data Pilot
REC name
West of Scotland REC 4
REC reference
24/WS/0061
Date of REC Opinion
14 Jun 2024
REC opinion
Favourable Opinion
Data collection arrangements
The University of Edinburgh and Public Health Scotland are developing a Brain Health Data Pilot, which will link brain scans to other health data collected by NHS Scotland. The combined data will make it easier for researchers to study dementia and other diseases affecting the brain.
How: We will use information already collected by NHS Scotland, so there will be no new contact with patients. This data has been used before to study health problems like lung diseases, heart attacks, and strokes, but including brain scans in this way will be new.
The ‘dataset’ will be developed by linking information from the brain scans to information on hospital admissions and medicine use. This data will be held in a secure network of computers with restricted access. Researchers will then apply to use the Brain Health Data Pilot for studies on dementia and other brain diseases.
To save resources, the data created during these studies will be added back to the dataset to help researchers in the future. Most users of the Brain Health Data Pilot will come from the United Kingdom, but we will investigate whether researchers from other countries can also use the dataset so they can share their expertise with Scottish and UK researchers.
Why: Currently, researchers have to create a new set of information each time they want to study a set of brain scans. One of the rules of accessing health data is that once they have finished their study, they must throw away the information they have created, which is wasteful. Research with scans is very expensive because it takes a long time and uses a lot of energy, releasing greenhouse gases. Creating one detailed dataset that can be reused and improved over time aims to reduce such wastage.
Keeping your information safe: Researchers will only be able to access the data by sending an analysis plan to the secure network of computers in Edinburgh. Data about individual people will not be shared and all results will be checked before relResearch programme
How do we know the research will be used for the public good? We will only allow research on the care, causes and consequences of dementia and other brain diseases. A panel with lay representatives will review each research plan to ensure it fits this purpose. All dataset users will have to make their analysis plans, results, and any newly created data openly available to the research community. Researchers can come from universities, the NHS or companies, but the research must always be made available to others to ensure that everyone can use the results for public benefit. How will the NHS benefit? We believe that more research and knowledge about dementia and other brain diseases will improve care. Also, making the results as open as possible will encourage research into brain diseases. Companies will not be able to use the information for other purposes without getting approval from NHS Scotland. Who are we? We are a team from the University of Edinburgh and Public Health Scotland. The funding for this project comes from the Alzheimer’s Disease Data Initiative, a medical research organisation dedicated to advancing research into Alzheimer’s disease and other dementias. The UK’s national institute for health data science, Health Data Research UK (HDRUK), manages the project.
Research database title
Brain Health Data Pilot
Establishment organisation
Public Health Scotland
Establishment organisation address
Gyle Square
1 South Gyle Crescent
Edinburgh
EH12 9EB