There has been a lot of discussion – and rightly so – about plans by the NHS England to share data about 55m patients with academic and commercial third parties.
One of the biggest issues with the data collection project, which would include information about especially sensitive areas such as mental and sexual health, was the short time given for patients to opt out.
The plans were only widely revealed by the Financial Times on May 26, with patients initially needing to opt-out by June 23. This deadline has since been extended, with the scheme now due to start on September 1.
The stated rationale behind the project was to improve medical research and boost population health, and it is widely known that accurate and deep data is the rocket fuel for innovation and the development of personalised services, including in health.
But we must never forget that data starts with the individual – each of us creates more detail and data points for our digital footprint every single day, but that data should still belong to us. We alone should be deciding who sees it or is able to access it, which is where this current planning fell down.
Many people may choose to share their personal health data in the hope it will help improve potential treatment for all of us. Many others may feel their data is too private to be shared, and worry about what will happen to it if it is.
Both of these viewpoints are completely valid, which is why transparency and trust around data-sharing, especially of data held centrally, is so important.
Transparency is key so it is clear exactly what will happen – who will this data be shared with, and what will they in turn be able to do with it? Will it be anonymised, and who will be in charge of that?
Trust, then, builds on transparency, with each of us able to make an informed decision about what is best for us, and our data, on the basis that we are completely clear about what we are being asked to do, and trusting that all the knowledge needed to make an informed decision has been made available to us.That includes being easily able to opt out (link here) if wanted.
Sharing of data has many, many potential uses, and can be a transformative force in all our lives. But it must only ever be with consent, because data sovereignty is critical too.