The GP Data for Planning and Research (GPDPR) programme was halted in the summer of 2021. It was redesigned to allow us to better understand the concerns of patients, GPs and the public and to ensure that key conditions are met before any collection of data begins.
Type 1 opt-outs currently have to be set manually in a GP surgery, creating additional burden for GP practice staff (particularly if there is a sudden rise in opt-outs) and potentially inconvenience for citizens. In line with the GPDPR ministerial commitment, we have undertaken user research to understand how we can improve the user experience associated with Type 1 data opt outs, based on user needs.
We began with a premise that a digital solution that patients could manage themselves, in line with the National Data Opt-Out, could support a better experience. This user experience (UX) research gathered the views of 15 diverse citizens, using qualitative user testing to explore what a digital Type 1 opt-out service could look like.
We developed 2 initial prototypes which we tested with 10 participants. The results from the testing were then used to create an iterated versions for further testing with 5 participants.
Findings of this research categorised overall user experience into 3 themes:
- behaviours and attitudes to data usage
- service design and user experience
- content and language
The initial prototypes taught us that too much content was perceived as being overwhelming, rather than informative, and made some participants feel as if they were being discouraged from opting out. This led them to feel that the experience in navigating to set their preference was lengthy and disjointed.
For the next iteration we were able to build on this learning to find the balance between providing users with enough content to understand their choices, and not overwhelming them with information, which could be confusing. This also applied to the language and terminology used, which also needs to be kept simple and transparent, whilst still explaining the choice.
At this stage participants were asked to complete the full digital opt out journey so we could assess if this could be done successfully with minimal guidance. This round tested if participants understood what a Type 1 opt out was, what it means for them, how it differs from other opt outs, how their data is treated, if implications of their decisions are clear and if any desired information was missing.
Participants showed varied levels of data literacy and attitudes towards data sharing. 1 participant confused opting out with rejecting or accepting cookies on the nhs.uk website. This finding is consistent with previous research indicating confusion on opt outs.
The user testing has demonstrated the need for a simple solution that would allow people to set their preference regarding how their patient data is used for purposes other than their individual care. Some questioned why different opt out services were separated, rather than having a unified opt out service. These different type of opt-outs also caused confusion for participants.
There is still more work that needs to be done to understand how to clearly explain the different opt outs, their purpose, and implications on how their data is used to enable individuals to make informed decisions.
This research has provided us with early indications of the user needs for any potential development of a digital service for Type 1 opt outs. We are sharing insights with colleagues in NHS England and DHSC, who are responsible for delivering the Data Saves Lives strategy.