Reorganise the shelves in our ivory towers
Remind me who needs this data? Instead of medical research, let's focus on the data the NHS needs to help sick people get better
On 7 April 2022, the NHS published Better, broader, safer: using health data for research and analysis. Ben Goldacre led the report team. In July 2020, the same Ben Goldacre published an article in the BMJ titled The NHS deserves better use of hospital medicines data. I agree. Which makes me wonder if this very thorough, intelligent and considered report is even asking the right question.
Instead of wondering how we can reorganise the bookshelves in our academic ivory towers, should we not focus on the data the NHS needs to help sick people get better?
Which data is used to treat patients today?
My wife attends a follow-up clinic in hospital every six months. When she arrives, a nurse takes her blood pressure and checks her weight. If she is rushed or stressed, the blood pressure can be high. Today, there is no actual way of telling whether her high reading is caused by circumstances or some more worrying change in her health.
My wife also wears an Apple Watch. What if the blood pressure reading was at odds with the hourly and daily trend recorded by her wearable device? What if this data was visible? Would clinicians trust data gathered by a patient? How different would it be if she was a patient with dementia?
These questions are front of mind. The focus of the new report is using health data better for medical research. As Roy Lilley points out in Devilish Difficult, this is a complex topic and its far from clear the recommendations in the report offer a proper solution.
Remind me, who really needs this data?
I can't say if the recommendations work for research. However, it raises some basic questions in my mind:
How soon will Apple and Google have more UK health data than the NHS? Maybe they are there already.
Would patients not receive better care if doctors and nurses had access to all their health data, not just the small selection held in medical records?
At absolute minimum, should patients and clinicians not have access to all the medical record data the NHS holds?
We need more and better data sharing on the frontline. The infrastructure for this is in place. Every UK citizen and resident has an NHS ID. That number can be the backbone of quick and easy data linkage. Accessible to all on the same principles used in Estonia.
Security, privacy, information governance concerns? Does anyone really think NHS patients object to their GP sharing data with a doctor or nurse treating them in a hospital? Or vice versa?
Digital health: The data and innovation revolution
Data can be the foundation of a revolution in digital health. Better, more person specific health information can enable better care and better outcomes. Great digital tech can make life easier for millions of dedicated NHS workers and their colleagues in social care.
Innovation is not the same as invention. We have world class medical research establishments in the UK. That’s great for invention, its not the best way to innovate. Innovation thrives in open, dynamic environments. Led by ordinary people like you and me.
The NHS can be the best platform in the world for this kind of innovation. It has been in the past. Right now, the NHS is reversing down a road defined by management bullshit and anti-tech scaremongering.
Meantime, there is a revolution using data to drive innovation. Its been going on for at least 15 years. Healthcare will experience that revolution sooner than many think.
I will write more and often about this general topic. Triscribe will keep working to help the NHS use hospital medication data better. If you are interested in working with us to deliver the real benefits of digital innovation, get in touch: kenny@triscribe.net