HM Government has just started a consultation on changes to the NHS Constitution which will run until 28 January 2013. This is extremely important to any statisticians working in biomedical fields in the UK and you should consider responding.
There is a section on data in the document which is being expanded to be more specific about rights (to confidentiality and opting out of sharing data) as well as pledges (“to anonymise the data … and use it to support research and improve care for others”, inter alia). The question the Department of Health asks is “Do the proposed changes to the NHS Constitution make clear how the NHS will safeguard and use patient data?”
Making a “constitution” and consulting on it takes place against the background of increasing fragmentation of health service provider organisations. When you work in the silo of your own organisation and are accountable to a local commissioning group and your own directors and governors, and your budget is being steadily trimmed from central government, you do not have time to worry about anything other than keeping the show on the road. Worthy tasks like making your data integrate with the other services in the country, and setting up a system to share it responsibly with researchers, are nice-to-do and not must-do. And so they have very little chance of ever happening. Outsource some of the provider organisations and the chance dwindles to zero.
As we are talking about the largest healthcare organisation in the world, the prize for getting this right is unparalleled. Researchers trying to work with bits of the data in isolation face insurmountable challenges because it was not collected for research and is full of biases and missing information. It is only in being able to link between organisations that the analyses become worth doing. The challenges will still be huge, but we need to start down that road now rather than back away for petty territorial reasons or inertia.
I’m not talking about the NHS having an integrated electronic patient record. In fact I’m not convinced that will ever happen. I imagine a relatively small investment to develop a centrally provided system that allows reputable researchers to apply for access to data from multiple providers, and tools that allow the providers to extract and anonymise data for research quickly. The result may be dirty data, difficult to match together between organisations, but you know what, we researchers are used to dirt. Let us access the data and we will do all the clever programming and maths we can to get it to work. That leaves the NHS resources focussed on providing care. And if we get it right, together we will have saved and improved lives around the world for generations to come. We might even patent something and make a few bucks, if that’s what you like.
So, my response will be something along the lines that the wording as it stands is not clear at all with regards to the pledge to use the data to support research. By publishing some headline stats in their annual report, as they already do, any hospital can tick the box for having “used their data to support research”. That is neither the intention of the Future Forum, nor the spirit of this constitution. Every organisation getting paid to provide NHS services should have a duty to save and improve lives of patients whether in their care or not, and to this end they need to take steps to share their data responsibly with researchers, including giving equal consideration to any researcher who approaches them requesting the data. By “responsibly” I mean you don’t give it away without evidence of competence and governance, and a signed contract, and confidentiality has to be ensured perhaps by a centralised tool to pseudonymise the NHS number, jitter precise numbers and withhold rare identifiable cases. None of this is new; it is all being done already.
This consultation is an opportunity to influence the detail in the constitution, which may not last as long as the American one, but will define the most basic aims of managing health service data in years to come, across all provider organisations from public, private and voluntary sectors. Whatever your views are, it is important that the Department of Health hears from people with expertise in managing and using such data. Anyone can contribute but (in my experience as an author of six NICE guidelines) it might help your case if you spell out your experience and affiliations when you respond to the consultation.
All the information you need is in this single document: