Writing Data Management Plans
Including Software Development in the EPSRC template
Generation Scotland is a medical research resource that provides investigators worldwide with vetted access to a database of over 25,000 volunteers. The project, which dates back to 1999, is led by the University of Edinburgh but partnered with the other major Scottish universities and NHS Scotland.
The mission of Generation Scotland is to create a large study reflecting the lives of people in Scotland, following individuals and their families from childhood to old age. The project fosters a strong partnership between volunteers and researchers on pressing issues of health and well-being. “Through this rigorous, ethical and safe approach to research, we seek to enable meaningful change in public health”, explains Isla Mitchell, Communication and Recruitment Coordinator.
Volunteers have been recruited since 2006, and over 25,000 people have joined already. The current aim is to double the number of Generation Scotland volunteers between now and 2024.
Visit Generation Scotland
A step-by-step guide for volunteers who would like to contribute to Generation Scotland. For Step 4: DataSync is used to share information with external collaborators who help process the samples.
Storing data: safe, ethical, reliable
Data for the Generation Scotland database is collected from various sources: the project combines responses to questionnaires, linkage to relevant NHS records, a DNA saliva sample for analysis and data analytics. To store this wealth of information, Generation Scotland use DataStore as it offers a secure pass-word protected environment with access restricted to team members, using the EASE authentication process. Archie Campbell, Chief Technical Officer for the project, explains that the tool has many user-friendly features, such as shared group spaces, and easily accessible support from IS Helpline. During lockdowns, when researchers had to work from home, they were still able to connect to DataStore via VPN. “As far as our team is concerned DataStore is the key service which enables us to work together as a team.”
Read more about DataStore
Sharing data with collaborators: secure, fast, robust
A core value of Generation Scotland is open science. Isla Mitchell highlights that open science, combined with public engagement and consultation, are key to share findings, influence health policy and improve lives. Researchers can request Generation Scotland data to use for their work. That way, Generation Scotland has helped support insights into areas such as COVID-19, cancer, diabetes, depression and dementia.
How is data shared securely with the research community, once requested? Archie Campbell outlines that they need to be able to send data safely to other researchers in Edinburgh and collaborating partners outwith the University of Edinburgh. “We want data to be encrypted during transfer, accessible only by the recipient, password protected and time-limited. DataSync offers these capabilities, along with a seamless interface with DataStore. To begin with we only used it for research data releases, but now we also use it regularly to send volunteer address details to a mailing company and receive data back from them too.”
Archie Campbell has been looking after the data since 2007. Before using DataSync, the project relied on sharing data via encrypted spreadsheets via email. However, often the data was too big, so the emails bounced back. “There were endless problems sending data to people who were entitled to have it”. As a one-off secure one-off file transfer service, DataSync has offered a solution.
Read more about DataSync“Through this rigorous, ethical and safe approach to research, we seek to enable meaningful change in public health.”
Generation Scotland Team members promoting their work at the Edinburgh Science Festival, National Museum of Scotland, April 2023.
Contributors to the case study
Isla Mitchell is Communications & Recuitment Coordinator at Generation Scotland.
Archie Campbell is Chief Technology Officer at Generation Scotland.
This case study was written by Dr Sarah Janac, Research Facilitator for the College of Medicine and Veterinary Medicine.
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