We are at a critical point in the development of a data-driven health and care system. Health and care systems across the UK are moving at pace towards digitised and linked health and care records. Citizens increasingly expecting that their information can be shared easily with professionals in their care and on what terms. The amount of health data collected about us across all domains of our lives from our smartphones, wearables and online platforms is growing exponentially.
However, public trust in the use of personal data is at an all time low in the wake of scandals like Cambridge Analyica. As more complex and personal data is held about us digitally, including genomic and biometric data, it’s becoming ever more important to build public trust around how data is used, both at an individual and population health level - now and in the future.
As well as building trust and protecting people’s privacy, we also need to have a more nuanced debate about the value of sharing data if we are going to unlock its benefits, not just for an individual’s care, but for others with similar conditions, as well as the clinical and research community.
We want to engage citizens from diverse backgrounds and geographies from across Scotland, to develop a deeper understanding of citizens’ opinions and ideas for the use and sharing of health and care data, and to explore alternative possible futures together. Building on Nesta’s work in new methods of public engagement, we have launched an Invitation to Tender for partners to work with us to explore some of these questions over the next 12 months. For more information on the project read our blog Why it's time to have a dialogue with the public about health data.
If you would like to get involved in this project, we’d love to hear from you. Please get in contact with Sinead Mac Manus, Senior Programme Manager, Health Lab.