When talking about the health service, it is often more prudent to use the language of theology rather than policy. Phrases such as “hands off our NHS” and “the NHS saved my life” are common place and demonstrate the reverence the British people have for it, and the personal ownership many of us feel we have over it. Nigel Lawson’s adage that it is the closest thing we have to a national religion still rings true.
There is no doubt that our health service is a world leader, and I myself have personally benefitted from the care it gives, and was grateful for not being handed a bill at the end of it. But, at risk of committing blasphemy, are we worshiping a false idol?
This week I attended a fascinating workshop of cancer patients (as part of my work with Empower: Data4Health) where I got to hear first-hand what they feel the health service has done for them, what they thought it could do better and things they don’t want it to do. I also heard from a number of health experts on research they had conducted into public and patient attitudes to the health service. In particular, the research was focussed on patient and public attitudes towards the data the health service does (or does not) hold on us as individuals and what it does (or does not) do with it.
What struck me in their findings was what seemed to me a lack of understanding of what our health service actually is and how it works. By that I don’t mean the public lack a detailed understanding of medical practice, or the bureaucratic processes of the NHS (few have the need for that knowledge), but rather a lack of understanding in a general sense of what the fabled acronym that is our National Health Service actually is.
For a start it’s not national. The health services in England, Scotland, Wales and Northern Ireland are devolved to a large extent, and work quite differently in each part of the UK. The service a patient gets, the priorities each individual health organisation has, and indeed the funding that underpins it, varies significantly from Land’s End to John O’Groats and everywhere in between. The main commonality is the fact that it’s free at the point of delivery (though even how free does vary across the UK).
Secondly it doesn’t make medicine. The privatisation fear that constantly frames any discussion this country has about the NHS often demonstrates, I believe, a misconception of where the medicines we take and the equipment our doctors use comes from. There is no army of NHS public sector workers squirrelling away making medical compounds and MRI machines. That is the work of professionals in the pharmaceutical and medical engineering sector. The NHS buys their products in and prescribes them to you.
This misconception and the idolatry that surrounds what the NHS does for us, and indeed what it doesn’t do for us, is important. As it has direct implications for our expectations of it, who we think is accountable in it, and crucially what information we’re willing to share with ‘it’.
The research presented at this workshop (organised by the fantastic www.usemydata.org team) showed that patients are very happy to share as much of their medical information as possible with the NHS to further the pursuit of medical research (their altruism was tremendous). But that willingness falls considerably when they are told there will be private sector involvement in their data, i.e. it will be shared with pharmaceutical companies, or health analytic specialists, etc. Consent disappears almost entirely if you say it would end up in the hands of an insurance company.
Though this may be unsurprising to hear, it really matters to how “our NHS” meets the challenges of the modern world. Private providers, third sector providers, academics and more, are all deeply interwoven into the technicoloured patchwork that is the NHS across the UK. You cannot simply give one part of it access to medical data, whilst cutting the other part out.
The private sector, academia, charities too, all team up to do medical research. We can’t simply give research data to the charities and academics and not give it to the pharma companies that have the labs and technicians. It would be nonsensical.
In short we need to be far more grown up about how our medical data is used. It isn’t about handing over huge amounts of meta data so that companies can better tailor your internet pop up ads so that you buy the latest innovation in ibuprofen. It is about collecting data to create the medicines and treatments that save lives.
In an age where we tick a box handing over great swathes of our personal information to the likes of Amazon, Facebook and Google, we should not be so frightened to share and leverage our most valuable health information. This generation and the ones to follow do and will expect information to be available at the touch of a button; why shouldn’t we be able to access our own medical records like we do a LinkedIn profile?
It goes without saying that every effort must be made to safeguard and secure that information. But there will be no perfect system (but then our current paper file system isn’t exactly perfect either), and we cannot let that hold us back from making vital progress. Data saves lives.
Source: UK Tech – The Huffington Post