Data Dialogues
What was the challenge?
Every day we share our personal information online, from pin drops to personality quizzes, to social media content and cookies. But when it comes to healthcare data, should we be more prepared to give it away? What are the benefits to us sharing it? And who do we trust to keep it safe?
We were commissioned by the Scottish Government and Nesta to find out what the Scottish public already knows about healthcare data and lead them to consider how it might be used in the future. Originally conceived as a touring installation, we responded to COVID-19 restrictions by redesigning and developing Data Dialogues into a dynamic and accessible series of digital workshops with interactive 3D elements.
What did we do?
We created our very own ‘Future Pharmacy’ to transport participants to a world where data is actively used to determine the type of healthcare patients receive. The Liminal Space team facilitated each session, steering conversations around ownership, safety, trust and value and encouraging participants to consider the nuanced effects of a more advanced digital system- from more personalised and independent care, to predicting or preventing future illnesses in patients.
Our ‘Future Pharmacy’ workshops were attended by over one hundred members of the Scottish public, each receiving their very own ‘prescription’ in the post. Once unboxed, prescriptions contained 3D fictional medicines and supplements based on themes such as personal internet search history and sleep, diet or exercise trackers linked directly to opt-in GP services. Designing and building individual goodie boxes provided a playful way for us to elicit authentic and real-life responses from participants, whilst allowing them to safely take part from home.
We shared our findings report with Nesta, the results of which have fed into the Scottish Government’s national survey. Designed to gain a better understanding of the public’s knowledge on data sharing in health and social care and explore possible futures based on this, our final report includes valuable insights from the group discussions held during the Data Dialogues workshops.
“I’m ok with my data being shared for ultimately anything as long as it’s bringing something to future generations”
“I trust the NHS as they have a lot of my data already, if my data was to go to any other companies, I would lose trust significantly”
PHASE TWO
In the second phase of workshops – aimed to surface insight from people from different minority groups who would have specific experiences of engaging with the healthcare system – we recognised the value of trust and lived experience in convening these types of groups, and so we sourced and trained facilitators who each represented and advocated for the group they were leading.
They were able to bring their knowledge and insights working with these communities to add context and depth to our findings. We adapted our content using feedback from the previous sessions and expertise from our facilitators, creating a video introducing the participants to the topic more specifically and selecting items from our Future Pharmacy that would spark the most helpful conversations.
“I really enjoyed being part of the project – it gave me a lot of food for thought. I enjoyed working with the team from The Liminal Space, who were helpful and supportive. I enjoyed being able to connect with carers who were not necessarily being supported by our organisation and who gave different perspectives on the subject matter.”