Thread by @axelheitmueller

A few thoughts on potential options for where next with GP data sharing now that the programme has been paused based on our experience in London over the past 2 years. Apologies for a long🧵

bbc.co.uk/news/uk-politi…

1/15

Firstly, let’s give credit to @NHSX @NHSDigital and @JimBethell for calling a pause. This is never easy once a policy has been announced and will attract the inevitable victorious shoulder clapping amongst some. 2/15

At the same time, the starting point is now a trust deficit which adds additional challenge. Two months is also not very long to recover. 3/15

The good news is that over the past two years, several places in the UK have worked with the public on exactly these questions. This work can act as a stepping-stone for the coming weeks and months. 4/15

One of these examples is the @OneLondon4 citizen’s summit that brought together a 100 randomly selected Londoners to work with them over several weekends in February 2020 (I declare a CoI as I was involved and @Ldn_ICHP continues to be so). 5/15

The idea is to make citizens experts in this area to enable informed deliberation of particularly tricky trade-offs e.g. who to share data with & under what conditions. This is not a focus group or a deep listening exercise. This is detailed policy combat with the public 6/15

The experience has been humbling on many levels, the public engagement astonishing. The results & recommendations now form the backdrop for everything we do in our @HDR_UK @DiscoverNOWhub data hub and the dialogue with the public continues. 7/15

Other hubs have done similar work and so have @Patient_Data & @involveUK. We have also used this approach to look at the implications of post-Covid service changes to e.g. A&E, partnering with @IpsosMORI and all virtually 8/15

Most interestingly, the recommendations for data sharing went a lot further (e.g. in terms of industry engagement etc) than many policy makers had anticipated at the outset. Ask sensible questions, inform citizens properly and you get incredible conversations and insights 9/15

100 citizens are exactly that and not more. London has 8 million residents. So how does this help? It only does if the wider public has trust in the process as well as recognises that ‘people like themselves’ have been involved. 10/15

Amplifying beyond the group of participants is therefore crucial, a local diameter of trust matters. All materials & videos are publicly available onelondon.online/citizenssummit/. This is not something that can be done quietly and privately, it would miss the point 11/15

Building on these existing pieces of work from London and elsewhere provides an opportunity for the coming weeks. We don’t have to start from scratch which wouldn’t be possible before September. 12/15

Instead, let’s make transparent what citizens have already worked through, their views and recommendations and focus on specific questions. This will build further trust. 13/15

This only works, however, if genuine jeopardy is on the table from government i.e. if there aren’t any specific unresolved policy trade-offs this is going to cause more harm than good. 14/15

Data sharing is vital for progressing our knowledge whether in the public or private sector and in order to provide safe and efficient care. We need to get this right this time otherwise we will all be worse off 15/15