'Our data journey must begin with a first step': a blog by Prof. Antony Narula.
There are inherent issues with many healthcare data schemes that consultants are aware of. The difficulty is, when there are high profile cases of poor care there is a tendency for the powers that be to over-legislate. In trying to legislate for individual cases you can often come up with a huge bureaucracy with limited benefit.
If you look at the publication of annual performance data from the NHS it has been fraught with problems. In the first year, some vascular surgeons were pilloried in the national media for activity which has been wrongly attributed to them. It was a shambles.
There are also problems with what can be meaningfully measured using data. There is a trap here in social sciences known as the McNamara fallacy, named after Robert McNamara, the American Secretary of Defence for much of the 1960s. You can’t measure what’s important so you measure what you can, and that becomes important. Surgery is often the starting point for measurement because surgery fits into neat and identifiable units of activity. However, in a specialty like mine – ENT, the conversion to surgery rate is only around 8-15%, meaning that much of our activity simply isn’t subject to measurement. The most common indicator of quality and safety of surgery is mortality. While mortalities must always be reported and investigated, the likelihood of mortalities is so low that any rate is likely to not be statistically viable.
All things considered, I can understand the hesitation within some quarters towards the increasing number of healthcare data initiatives. There are genuine concerns around process and implementation, but there is also real potential with robust healthcare data to better understand and improve care.
In my time as president of ENT UK, I was involved in a number of research and data initiatives – some more successful than others. Where the research question was clearly articulated, and the process robust, data gave unique and important insights.
A bugbear of mine while the president of ENT-UK was paediatrics. Why should someone work with children in the private sector when they don’t in the NHS? Having the actual evidence of someone’s experience and the procedures they undertake across their practice is crucial. Where the Private sector and NHS have famously not worked together, a seamless approach to data collection across NHS and private practice has to be the way forward.
A seamless approach will also bring new insights with readmissions. When I was working at St Mary’s I remember a case of a patient who had come in after a severe post-operative bleed following tonsillectomy in a local independent hospital had ruptured while recovering at home. We all hear anecdotal stories of this happening, but do we know how common this is? And more importantly – did the independent hospital ever know the patient was readmitted? I don’t know, but they would certainly want to know.
Of course, data on private care is starting to dramatically improve. Within Orthopaedics there is the GIRFT programme which brings together whole practice activity. The Private Healthcare Information Network (PHIN) requires hospitals to collect data on private healthcare using the same standards and definition used the NHS, and will publish performance measures for hospitals and consultants on a public website.
As part of this process, PHIN has been encouraging consultants to review their practice data and validate for publication. While I have experienced issues with accessing their platform, and there were inaccuracies within the data, I’m encouraged that there is a validation process in place. I want to have confidence in my data, so having the chance to review and validate it is absolutely right – even if the system can be frustrating.
Some consultants will be sceptical or suspicious about the data, but we are in the 20th century now – almost 2020. We can’t push back against this tide. When I was appointed in 1989, if you referred a patient everyone would look at you as if to say “what’s wrong, are you scared or are you not properly trained?!”. In one generation that’s changed completely and now it’s considered good practice to refer people on. We have to accept that data transparency is the way forward for healthcare. There will inevitably be issues within the data, and this could take two to four years to really get the data right. But the fact is if you don’t start somewhere then you aren’t going to get anywhere.
Professor Antony Narula is a Consultant Ear, Nose and Throat Surgeon and past president of ENT UK, The British Society for Otology, The Association of Otolaryngologists and Young Consultant Otolaryngologists. You can find his profile here.