We have just completed our first phase of public engagement activities which focussed on exploring citizen’s views on sharing their data with a range of health researchers and healthcare professionals via distributed ledger technology (DLT).
The key objective for this phase of engagements was to instigate general discussions with the public about any concerns or unmet needs around the current digital health data sharing context. This was undertaken in order to ensure that public stakeholder views and experiences were taken into account as a crucial first step in the co-design process. We also aimed to use these discussions to explore and identify the kinds of choices and privacy options stakeholders may want and need from such a platform before the technical design team began to develop a range of prototypes for use in the second phase of the co-design process. Read our full report and analysis here.
Click on the links below to see examples of our ‘user stories’ which formed the basis of our focus group discussions.
What did we learn from speaking with the public?
The data gathered from the Phase 1 focus groups resulted in the generation of a comprehensive list of features and functions that citizens would like to be included in the final design.
Participants also identified a number of more general and use case specific benefits of interacting with the CDIP platform.
A number of concerns were also raised by citizens about who will own the platform and how it will be governed and regulated. In addition, initial data analysis of focus group discussions suggests that citizen’s require further information about the range of different consent and data sharing options as well as assurances about levels of data security and privacy for users of the proposed platform.
In January 2021, concerns and issues raised by focus group participants will be explored in greater depth by the whole research team in order to decide which design options would be the most productive to develop as design probes to use in our next phase of public and professional stakeholder engagement. We also plan to generate a visual representation of the ‘journey’ that citizen health data may follow as a result of citizens using the platform to share their data with a variety of different stakeholders in the new year.