The NHS data store delay- would more consultation have helped?
How much do you think about the data the NHS holds on you? It’s some of the most personal data that any individual has- details about our illnesses, our health and wellbeing, and what treatments we have received over our lifetimes. There has been something of a furore this week over the implementation of a new NHS Digital system involving the storage and sharing of patient data. The planned system brings together the health records of around 55m patients into a single database, which would be made available to both academics and third party commercial interests for research and healthcare planning. Much of the controversy has emerged from the lack of information on the system, the lack of engagement with the public and the quick turnaround for opting out of the scheme.
It certainly seems that the project was not consulted on, quite unusually in an often very consultation and involvement focussed sector, and the communications around the proposals have been a litany of unpublicised statements and missteps. Under the original plan, patients would have had until 23rd June to opt-out of having their data shared- not far away, especially given that there has been little prominent advertising. Indeed, it seems that most professionals in the healthcare sector have been highlighting the problem for a long time, with letters from medical representative bodies calling for an extension of the time limit and a delay to the program.
The argument is illustrative of several separate points relevant to those working in consultation and engagement. Firstly, it demonstrates the need for consultation on these sorts of projects. Had the Government properly consulted on their intentions, they would have been able to pick up in advance the doubts and problems that many individuals and sectoral workers had with them. They could have ensured that the concerns over data handling and security were ironed out in the programme from the start, rather than being forced into an embarrassing climb-down to engage more with stakeholders.
It also demonstrates the value of consultation as an information sharing mechanism. Although the consultation would not have reached everyone, it is hard not to think that had it been consulted upon earlier, the programme would not have achieved greater public awareness in advance of implementation, rather than crashing into prominence a matter of weeks before a key deadline for those who wish to opt out. A consultation would likely have drawn media attention, and given the historical relationship between Government and handling large quantities of people’s data may well have drawn attention to it. Even those who were not responding to the consultation directly, might then have at least been aware that it was something to keep an eye on.
We might also say, on the more political side, that a consultation would have reduced the opportunity for attacks on the Government. We have seen over the past week accusations of the system being ‘snuck out’, a potentially damaging accusation for any decision-making body. But what evidence could the Government point to to effectively counter such allegations? Very little. The situation has been exacerbated by the opacity of the whole project. Not only is the opt-out form somewhat difficult to find, but even GPs, a key lynchpin, have reported that they don’t have a clue about it.
So, three very good reasons that a consultation might have been worthwhile on this. It’s a problem we’re likely to see again, unless the Government starts thinking seriously about its processes. With an increasingly data-aware, if not exactly data-savvy, population, things like this are always going to generate controversy. Whilst in some aspects of our individual lives most people tend to be fairly laissez-faire with the security of their personal data, it is perhaps somewhat ironic that whenever the Government, the defenders of our security and livelihoods, becomes involved suspicion levels shoot up. Giving people a key role in the decision-making process via consultation and engagement would be a good first step in increasing transparency and trust. We hope the Government learn from this experience.