At the heart of the NHS reforms is the mantra, ‘no decision about me, without me’. To enable this new culture of patient-centered decision-making, the Department of Health sparked a so-called “information revolution”. This means giving patients easy access to high quality, personalised information that will help them on their way to making the right decision for them, be it choosing a treatment or understanding their condition.
The road to revolution is never smooth and data protection is the latest obstacle to hit the front pages. Earlier this month Health Secretary Jeremy Hunt announced that surgical performance data would be published across 10 disciplines; the intention being to drive standards up by pushing poor performers out. Instead it was revealed that surgeons were being given the choice to ‘opt out’ raising concerns of skewed data and ineffective risk adjustment. Whilst the majority were happy to give patients the power to make their own minds up, 92 surgeons took advantage of their ‘rights’ and vetoed the publication of their data.
Threats of ‘naming and shaming’ from the DH were followed by uproar from the Royal College of Surgeons and calls for the Data Protection Act to be re-written entirely. The whole thing was tantamount to farce (or at least that’s what Whitehall said).
Farce or no, it does raise serious questions, like is publishing outcomes data is the right thing to do in the first place? In her latest blog Catherine Foot from the King’s Fund highlights evidence that data sharing in cardiac services can be associated with improved patient outcomes. Causation has not been proven, but the case can be made. Evidence aside, Foot points to the “inherent moral value” of transparency in the public sector and patients’ fundamental right to this data.
It is hard to argue with this sentiment, but on the basis of Hunt’s latest attempt at transparency, our revolution is on shaky ground. Motivation for change is, at best, patchy; so what about the means? Even if every clinician, commissioner and policy maker were wholly committed to the idea of opening up our health service, is the NHS really ready to handle 21st century communications?
When we look to our international peers, it’s clear that we’re lagging behind in the innovation/adoption stakes. In China, some 50 per cent of clinicians use social media to interact with patients, with some specialists amassing hundreds of thousands of followers. Hospitals are following suit, which makes sense as 17 per cent of Chinese patients use the internet to source information to pick a hospital.
The NHS is not without its pioneers. DocCom is a new social network for clinicians, allowing clinicians to connect, collaborate and share information securely. DocCom founder Dr Jon Shaw noted that the NHS is yet to adopt the many forms of technology that we take for granted in every other walk of life. Forget iPads and emails, the health service still relies on fax machines and pagers! Shocking? Maybe. But according to Dr Shaw it is fundamentally unsafe. Information can be lost, delayed or both and this will almost certainly have a detrimental impact on the patient.
There is no doubt that the “information revolution” is an essential part of the wider transformation of the NHS; we have consensus on this at least. Yet, making it a reality will take much more than publishing data and giving trainee doctors an iPhone instead of a pager. This is about collecting the right data; using consistent methods of collection and coding; and making it accessible across the entire health and social care service, amongst patients and clinicians alike.
As with all strands of the current health debate, data sharing is inherently wrapped up in the amorphous integration challenge, creating a health service that moves and thinks as one. To find out more about this macro health debate, click here and read the latest blog post from Portland’s Head of Health, Louise Fish.