In yesterdays Telegraph, Sir Nick Partridge who is the deputy chair of the Health and Social Care Information Centre wrote about the way in which the NHS has dealt with our data. “We must make sure there are no surprises for the public about how their information is being used, that they have a choice in this and that we are honest about the balance of risk. Every single one of us has a part to play in making sure we get this right.” These two sentences appear in the paragraph immediately prior to the paragraph which explains “The HSCIC is still improving its practices. It is also endeavouring to increase its transparency. We have put in place a way of telling patients and the public how their data has been used. The register of approved data releases is published every three months and is a crucial tool in opening up what has been unnecessarily hidden for too long. We also need to show that our controls are meticulous, foolproof and solid as a rock. This is the only route to take if we are going to be able to earn and retain your trust.”
Although this is an important piece, opening up as it does the need for you and I to take responsibility for how our data is being used, there is very little detail on what that means in practice. My health data does not just affect me, it also has a bearing on my own children in so far as the hereditary conditions I pass on to them are concerned. The sharing of my own data has a significant implication for my children and so my decision must also consider if I am inadvertently revealing data about a generation who I cannot speak on behalf of. I am personally relatively sanguine regarding the use of my own data, but I have no real understanding of what it will be used for.
I have sat in a number of meetings where social care for communities is being discussed in the context of the failure of one social agency to pass on data to another due to perceived data protection issues. In these settings the people wanting to improve the care being offered, agree to go back and do what they can to find a way of sharing information that might reduce the pain and isolation of people we are all wanting to care for better. In these settings at times it would be helpful if the data controllers could hear for themselves how important this action would be. However the safeguard for the people concerned (or the barrier to their better care) is that the data controller is not in the meeting. On the other hand the account by Mr Partridge explains “There is a groundswell of change. Conversations between applicants and those responsible for managing data access are beginning to be collaborative. And this is the vital point, for the better use of our health data can bring about enormous advances in medical science and help ensure that NHS funding is spent as wisely as possible.” It seems strange to me that those responsible for our data are put in a position of being able to collaborate with applicants for our data when care for individuals takes place in a context where the data controllers are held many layers away, unable to understand that lives and quality of living may be affected. Although I am a big fan of collaboration and have spent my career collaborating, the language in Mr Partridge’s article implies a closeness that must surely make our capacity to play our part very superficial and modest, bearing in mind how little understanding we have. Perhaps Nick could write another piece explaining who ensures that in the enthusiasm of well financed collaboration meetings, that our data controllers don’t give away something they shouldn’t, not just for the sake of those of us who can consent or demur in this process, but for the generations to come!