The Exploring Patient Data Project - Interfacing

In honour of Pancreatic Cancer Awareness Month, WEISS has turned the foyer of Charles Bell House into a small pop up gallery to display Interfacing, a series of 9 prints and a film made by Molly Macleod with WEISS researchers and people affected by pancreatic cancer. On the 18^th of November, the display was made open to the general public for World Pancreatic Cancer Day.

Interfacing was made as part of The Exploring Patient Data Project, conceived by the public engagement team and WEISS researcher Alex Grimwood to learn more about patients’ thoughts and feelings on the thorny issues of how data is gathered and used in medical research. The approach was two pronged; one group of researchers would work with an artist to engage people affected by prostate cancer, while another artist researcher partnership would engage with people affected by pancreatic cancer. The artists and researchers would work together to formulate workshops that would enable everyone to express their views, pose questions and learn from each other in an accessible manner. The artists would then take the materials, themes and questions generated in the workshop, interpreting and remixing these to create works of art that would reflect back what was learned to all involved and a wider, more general audience.

WEISS’s Ester Bonmati and UCL colleagues Alex Ney and Steve Pereira collaborated with artist Molly Macleod. Molly lead a workshop for the researchers and four people who had been carers for people with, and lost a loved one to, pancreatic cancer. It was conducted over Zoom, using materials she had dispatched in the post. She taught everyone the primitive yet beautiful photographic technique of cyanotyping to create data self-portraits. Our scientists shared details of their research and the carers shared their experiences while each worked on their individual cyanotypes. These were then posted back to Molly who photographed them microscopically to create a dataset of 1000 images. This dataset was used to train an AI model similar to those currently used by medical researchers to improve early diagnosis of pancreatic cancer. From this she created Interfacing; a film of new, shifting, hybrid images that represent how the scale of datasets used in medical research unify the contributors as they become anonymized by the process, representing the disparity between the macrocosm of big data and the microcosm of personalised individual patient care. This film is a collaboration between artificial intelligence, artist, medical researchers, pancreatic cancer patients and their carers. 

The whole concept was very exciting and I enjoyed engaging
- workshop attendee

I am already using some of the things I learned [from the PPI group] to inform how I write patient information booklets.
- Ester Bonmati

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