Health data - deflation, devaluation and the Estonian solution
In a world of inflation, health data is an exception. Health data suffers from deflation. Despite the hype, people see little value in health data.
tldr: In a world of inflation, health data is an exception. Health data suffers from deflation. Despite the hype, people see little value in health data. We need to build trust and confidence to realise the potential of data for improving health and care.
“The first task is to make sure that there is enough demand to provide employment for everyone. The second task is to prevent a demand in excess of the physical possibilities of supply, which is the proper meaning of inflation.”
From a radio broadcast by John Maynard Keynes in April 1942
The deflationary economics of health data
A couple of weeks ago, I promised to write about data inflation. I lied. This article is about the real problem of health data, deflation not inflation.
The supply of health data exceeds any possible demand. As a result, the economics of health data are exactly as economists would predict. Over supply means that no-one places real value on health data.
You may have noticed tremendous hype around health data and AI. Yet the value of health data remains unrealised. Nurses, pharmacists and doctors all tell us they have too much data. If anything, the demand for data from clinicians and patients is falling.
Meanwhile, supply of health data is growing ever faster. The NHS grinds forward, painfully accumulating more and more health data in unstructured, siloed systems. At great cost in both money and resources.
Around the edges, mobile phones and wearables silently track and record health data. My guess is that Apple, Google and the rest already hold more UK health data than the NHS.
“Where is the wisdom we have lost in knowledge?
Where is the knowledge we have lost in information?”T S Eliot
A quick reminder about our survey, Triscribe saving you time. We want to hear how Triscribe can make your life, or the lives of others in your team, easier by using data to save you time?
How can we use the data that exists to make a real difference to the health of real people?
Tackling a problem of deflation and devaluation, like health data, requires a different mindset from inflationary challenges. Massive over supply has destroyed the value of data. The key is to reform and re-establish trust and confidence amongst users of the data. For health data, that means patients and clinicians.
Fortunately, there is a clear, proven model for doing this. It comes from the tiny Baltic nation of Estonia, which is the most advanced digital society in the world. You can read more about it here .
There are seven broad principles that apply to everything, health very much included:
decentralisation - there is no central government database. digital ids are held by every company that wants to use them in a distributed network called the X Road.
interconnectivity - internet access is a human right in estonia, even in the depths of their immense forests.
integrity - the secure, distributed network ensures the integrity of the data. no-one can mess with it, including the government (and your doctor). everything is held to the highest level of security, there is no hierarchy.
open platforms - all the code is open source, only the encryption keys are secure.
no legacy - leave no system or source behind. new technology has to account for and embrace the old.
once only - enter any change or update to the data once and once only in every system, private and public. change your address and the electoral roll, your doctor, your bank and your gym all have your new address at the same time.
transparency - every citizen can see their data in real time. more important every citizen can see who has accessed their data at any time, named individuals not just institutions.
The model works. 97% of Estonian citizens have countrywide accessible digital health records. 99% of all prescriptions are digital. These records are queried 500,000 times a year by medical professionals and 300,000 times by patients.
The best thing about the Estonian model is that is just that, a model. It’s a model of e-governance. It doesn’t need massive investment or structural change. All it takes is some vision and determination.
Use the data that already exists
The NHS already has the data. Nurses and support staff spend countless hours gathering and recording it. I wrote a few weeks ago about the friction that constrains effective use of data in the NHS today - Better data in the NHS - Myths and misdirection
We owe it to the 1.5 million overworked, undervalued and underpaid people who keep the NHS running every day to use this data.
Triscribe is building tools to extract knowledge from data. We make our own small contribution by following some of those key principles. Everything is open source. Our software sits in a secure cloud, ensuring integrity and accessibility.
The Estonians reckon their digital society saves every citizen two weeks of time every year. Triscribe modestly hopes to save every user at least one hour every week. (Still time to fill in our survey and let us know how we could do this for you and your team.)
We would love to save those hours for people working in your hospital. Get in touch if you would like to find out more: kenny@triscribe.net