On Tuesday NHS Digital deferred the date it will share ‘pseudonymised' data from GP medical records for use in planning and research in England to September 1st, 2021. This followed a letter from the BMA and the Royal College of General Practitioners. The BMA called for a delay to the introduction of the new data programme ‘until patients and the public have had time to be aware of and understand the programme and choose to opt-out if they wish’.
Similar concerns led to the controversial data-sharing project known as Care.data being scrapped in 2016 in the wake of significant criticism about its public information campaign. This attempted to explain the project but was not clear enough and did not reach everyone.
The ongoing dispute over health data sharing suggests that we are now at a major crossroads on this issue. The government and NHS Digital need to decide whether – and how – to engage the public in shaping the implementation of this programme before it comes into effect.
There are multiple ways to engage the public in policy and decision making, from consultations and surveys to full scale deliberative processes like Citizens’ Assemblies. The BMA has already called for ‘critical’ public consultation and engagement over the entire process, stating that policies as contentious as these should be ‘co-produced with patients as equal stakeholders from the beginning rather than simply informing them that they are being introduced’. Given this context, I would argue that the success of the NHS Digital programme could hugely benefit from a deliberative form of public engagement.
Helpfully, a public deliberation in this space would not involve starting from scratch.
Back in 2016, Ipsos MORI carried out research for Wellcome exploring public views of patient records being used by commercial organisations for research purposes. The deliberative engagement, and the survey that followed, found wide support for this, so long as there is clear public benefit and appropriate safeguards are in place. Earlier this year, the work of the National Data Guardian for Health and Social Care, in partnership with Understanding Patient Data defined what the public mean by ‘public benefit’.
Perhaps the most useful example of all, which could act as a foundation for public engagement around the NHS Digital data sharing programme, is the OneLondon Citizens’ Summit. This was the work of Ipsos MORI delivered in partnership with The King’s Fund with support from Professor Graham Smith.
During the four days of public engagement – involving 100 members of the public, recruited to reflect London’s diverse population – the use of de-personalised data for planning and research was one of the key themes discussed and deliberated. The public learnt how data is used for planning and in research, were given the space to ask questions of experts, spent time discussing examples, and deliberated the benefits and risks at length. This ‘mini public’ were almost entirely new to the information we presented them with, with some coming to the conversation with misperceptions, and even a fair amount of hostility towards the idea of non-NHS partners accessing and using their personal data. The group ended by co-producing its own recommendations to policy makers, setting out a set of reasonable, specific and entirely viable expectations and conditions. These are being implemented at a London-wide level, along with the other recommendations of the Citizens’ Summit.
Very recently, working in partnership with Imperial College Health Partners, and on behalf of the Discover-NOW health data research hub, Ipsos MORI used this form of public engagement to explore one area in more detail. We designed a deliberation to address the question around which conditions need to be in place for non-NHS partners to have access to health and care data in a trusted research environment.
In my view we are already halfway there. And we have proved that if you give the public a complex area like this to grapple with, and you engage them in the associated dilemmas and trade-offs, you can expect a lot of value back.
It’s not about asking the public should data be used for planning and research purposes, rather how this should be implemented. An opt-out will always exist, and there will always be people who will opt out of their GP records being shared for this purpose. However, the number of people who feel compelled to do so could be potentially reduced if the implementation of the programme is carefully crafted with what’s important to the public in mind.
But is there enough time to carry out meaningful and impactful public engagement between now and September 1st? I would argue not. For the process to be suitably informed, to feel genuine from the perspective of those taking part, and the programme’s wider stakeholders, and for it to be robustly designed in an inclusive way, more time is needed. Rushing the process risks diminishing public trust right from the get-go.
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