I was listening to the news this weekend to an article on how the government wanted to increase the co-operation and systems integration between multiple government agencies, including health care, social care, police, local government and education. This was slightly reiterated this morning by the Mayor of London saying how he was working hard to get the London agencies working more closely together. Sadly, the catalyst for all this seems to have been knife crime.
Joining together all of the disparate systems used by all these agencies is not a technical problem. Yes, the full integration and interoperation of these systems is complex and due attention needs to be taken not only if the different interfaces and protocols in use, but also the differences in the way records are stored and the fields needed to identify them.
The first of these really just needs the cooperation of the system manufacturers to enable their systems to share all the information within them. The second is more complex as there can be many ways to identify the person to whom the record relates. The NHS uses the NHS number, others use the National Insurance number, still more use their own identifier. Therefore, something like a look-up table to link the various identifiers is required. But how do we check that the person with Identifier X is the same as the person with Identifier Y? Sometimes we have to resort to checking, names and addresses – all very well if they are presented the same way, for example I am known as both Mike and Michael; I move a lot so addresses may be inaccurate and I have seen my current address written three different ways on postcode look up systems. This all assumes that the name, address, etc has been typed in without spelling errors.
Then we have the issue of who owns the data and there are usually three contenders: the agency; the system manufacturer and the person to whom the data relates. Well most records in theory are owned by the person to whom they relate, with multiple exceptions that give the agency concerned the right to withhold access to them. The systems manufacturer has least right to the data, but they can disrupt sharing by highlighting the tremendous work and therefore cost that they would, apparently, incur to enable the data to be transferred to other systems.
I have had personal experience of working with a MASH (Multi-Agency Shared Hub), set up to prevent harm to children and vulnerable adults. Considering the importance of the issue and the political willingness to protect children, the lack of willingness of most agencies to share data with other government agencies is quite amazing. Much of this seems to relate to a combination of distrust, security concerns, job protection and a “why should I?” attitude.
However, the good news is that there is a growing political willingness for the UK to enjoy joined up government - there are references to this term from the 1970s and still we seem to be lacking the sowing machine. Actually, we are not – we are lacking the seamstress, the cabinet minister that has the charisma to say: “do it!” and who will not accept the inevitable excuses. We are due to have a new Prime Minister at the end of this month. Let’s hope!
A few years ago, there was an attempt to introduce national identity cards, which would have used a single identifier that could have been used to link all the systems together. One of the reasons stated was that it could be the start of a slippery slope towards the loss of privacy. Clearly many of those who protested happily share every minute of their lives on social networking, but they do have a point.
Patient Confidentiality is a cornerstone of the relationship between the clinician and the patient. If the patient thinks that information provided in confidence to his or her GP is likely to be shared with criminal justice, security services or even insurance providers, would they be so open? If the answer could be “no” then diagnostic accuracy would reduce and the time required for a GP to find out the full picture would seriously extend. Over 80% of us trust our GP, this cannot be said for any other government (or pseudo government) agency. It is paramount that this trust is not eroded: it is already challenged by increased waiting times and operational cost cutting.
There are times when It would be essential for the police to understand some of the things that are held in patient records, but access must be challenged at each request to ensure that there is really justification. We have an independent judiciary that could arbitrate here, as they effectively do now, but we must have iron-clad systematic controls to prevent abuse.
So maybe the key to record sharing is back to who owns and controls the information. Technically the patient or citizen owns his or her health and social care record, if that individual could decide who saw what and when, maybe the problems would be minimised. Could it possible for someone to go via a web browser and grant access to elements of their records to other agencies or individuals (including carers and care homes)?
Would you be surprised to hear that the answer is technically yes (with development), politically …. we’ll see.
Mike Morris, July 2019
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