Data sharing: Insight from Generation Scotland
Generation Scotland (GS) is a collection of human biological samples and health data from over 24,000 volunteers. Volunteers participated in one of a number of research studies by providing blood, other samples, clinical measurements and information about their health and lifestyle. GS recruited their first participant in 2006 and to date have received over 300 requests for sample and data use. Participants have enabled research into a wide variety of conditions including heart disease, diabetes, chronic pain and mental health.
During the webinar Archie shared his experience of the practicalities and governance of linking electronic health records. He discussed making GS data discoverable including a presence on ATLAS, a new advanced data search tool. Archie also provided an update on Generation Scotland’s CovidLife surveys. During the discussion, Archie answered questions about the cost recovery model at GS, patients’ personal data and participant engagement.
Polls were used during the webinar to gather information about attendees and their experiences, the results of these are shown in the graphs below. Not surprisingly, there was a good attendance from Scotland and the Covidlife study had a good level of awareness. Most participants used data from England with some using data from all four nations and Europe. Paperwork and the ability to find data were cited as the biggest barriers to using linked electronic health record (e-HR) data.