Building a digital patient representation
On a human sized table lies a human silhouette, surrounded and overlaid by indecipherable code and letters. Next to it, a surgical tray with red sheets of transparent paper (8 sheets make up the silhouette space). On top of it, written: “Who am I? Place the pieces over the silhouette to uncover new information about this person. But beware: anything you reveal will go to their Electronic Health Record, permanently available for everyone who can access their medical file”. As participants place the squares onto the silhouette space, it becomes more anatomical and the surrounding letters become legible. These pieces of text range from relatively uncontroversial patient data to more sensitive information. Participants must decide collectively whether each piece of data should be kept in the persona’s EHR or not, creating their own mosaic of digital patient representation.
Negotiating around digital representation
The intent of this installation is to prompt reflection and spark conversation regarding what constitutes a digital patient representation, how much information an Electronic Health Record should contain, and the impact that representational choices might have in the way one is perceived and cared for. The installation is designed to (ideally) be experienced collectively. Accordingly, the exhibitor will encourage participants to discuss not only what data should be recorded, but what changes when a patient becomes increasingly “data-fied” in healthcare.
How complete should a digital patient representation be?
After the first activity, participants are prompted to shift their focus to a nearby board containing a visual scale from 0 to 10. The scale represents the range between a minimally documented patient and a fully dynamic and detailed digital replica of them within the EHR. People place paper notes on the board, prepared for people to fill in: “I place myself at number ___ because: ___”. By placing themselves on the scale and reading other visitors’ notes, participants contribute to a collective reflection on the desired level of completeness of a digital patient representation!
