Getting access to cohort data isn’t easy. It’s right for cohorts to keep their data safe under strict governance procedures: cohorts don’t necessarily have the resources to deal with the many applications and interest they receive in their incredibly important data. The DPUK Data Portal was designed both to help speed up researchers’ access to cohort data and to support the cohorts in processing data access application and queries.
My job’s a relatively new one, and even though I’m not a researcher myself, it gets me up really close to the reality of what researchers are facing. The admin demand is big. The delays are frustrating but ultimately legitimate. Sometimes, simply a helping hand or knowing somebody is on your side can help.
“I’m in touch with researchers all the way, helping them navigate what still can be a tricky process of getting access to cohort data.”
My role comprises managing the data access process from first receipt of the application from researchers, through to enabling permissions and uploading the data. Each day, I’m in touch with the applicants and cohorts throughout the application process. I work with cohorts for decisions on applications and keep on top of record keeping for next steps in each application. Once the cohorts give the green light, I’m also involved in setting up user permissions and publishing the approved cohort data on to the DPUK platform for the applicant to access their data.
At the time of writing, the Data Portal has received 84 applications, which are at various different stages of the access process. 46 have been approved so far. Many of the cohorts will have differing procedures to follow to gain access to their data, and we accommodate these to suit the cohorts’ needs. I ensure that each application for cohort data follows the required procedure and keep track of what step the application is at in order to move it forward as quickly as possible.
A career change brought me back to Swansea – my home city. I’ve worked in translation project management, teaching and now I’m studying for an MSc in Health Informatics. It’s an unusual move, but one with more crossover than you might think. My role is all about communication – with our cohorts and our researchers.
“It’s not as quick as a click of a button just yet – although we’re working really hard so it will be as close to that as possible!”
Mark is one member of the Data Portal team based at Swansea University.
What to read next
Catherine Calvin, an analyst at Dementias Platform UK (DPUK), investigates population study data of adults in midlife and older, to understand factors that relate to the risk of developing dementia in later life. In a recent paper published in Nature’s Scientific Reports, Catherine demonstrates that genetic susceptibility to developing obesity – a contributing risk factor for dementia – may be modified by lifestyle habits.
As a data curation research assistant for DPUK, Josh is chipping away at the coalface of DPUK’s mission to bring cohort data together into a powerful resource for researchers. In his blog he allows us an insight into a key job that makes it possible for researchers to compare data across different cohorts in the Data Portal.