The database manager is the ‘data gatekeeper.’ They make sure that the study database is well-maintained and organised and that it can be updated with any new participant data. The manager also makes sure that participant data is without any errors and organised and prepared in such a way that makes it easy for researchers to use in their research.
Far removed from the study clinic and face-to-face contact with study participants, the database manager is the last major connection between the named individual and their data and biosamples.
To ensure that participants are unable to be identified, once participants are entered into the study they are identified only by a 7-digit number. Airwave database managers are the only people who hold the ‘key’ to re-link the names of the participants to their data.
A manager might access records by name if a participant would like to have their data deleted from the study, or when records need to be updated. Examples of these updates include reading death certificates to enter the date and cause of death into the database, or checks to ensure data is correctly matched to the proper participant.
This direct connection to the real individual represented in the data offers database managers a unique study vantage point: the administrator might interact with a named individual with the knowledge of the future health ‘stories’ their data holds, yet through the updating of individual records, they will also glimpse more of the individual than a researcher who looks at the same information reduced to ‘codes’ ever will. (As an example, updating a participant’s cause of death involves reading through a detailed death certificate, but much of this detailed information discovered by the manager will not be added to the database). However, of the thousands of participants within the study database, the manager said they will only look at a small percentage of these individually.
Within the work, I chose to highlight the data manager’s ‘gatekeeper’ role through representing them as the central connector between the participant’s life and the database.