Sharing personal NHS data: The ‘anti-data’ movement is more dangerous than anti-vaxxers

We share our data freely in many aspects of our lives, but whenever the topic of sharing our health data crops up we face a data dilemma.

It's time to move on from the Luddite culture of faux data security, argues Rachel Royall
It's time to move on from the Luddite culture of faux data security, argues Rachel Royall

We are conflicted. We think that surely sharing data can bring benefits but we’re concerned about the evil that could be done.

The latest media furore over health data has led to Matt Hancock delaying the new NHS Digital patient data store until September, allegedly due to a lack of public consultation.

The first problem in discussing data in healthcare is that data is a big word, a bit like digital. It means so many things to so many people. In the health service it even comes with its own vocabulary.

This complexity plays into the hands of some extreme campaigners who harped on about this thing in 2014 called Care.data (that was a shambles). But we now live in a different world.

In 2018 NHS Digital introduced the option for you and I to opt out of sharing our data (the National data opt-out) and the march towards digital transformation was given a massive kick up the bum by COVID-19.

Yet privacy campaigners still use Care.data as the stick with which to beat any well-meaning individual who believes that there can be huge benefits to sharing data in a competent, responsible and transparent way.

Building trust with comms

Of course there need to be safeguards around the commercialisation of health data and access to it. We also need governance and risk management systems around data loss and cybersecurity. And above all, the strategic value of communication and PR needs to be put into play to build public trust and engage the population in how their data is used and for what.

However, the vast majority of us want companies to develop services and products based on what we need. We’d accept nothing less from any other industry.

The fantastic book Invisible Women by Caroline Criado-Perez explains the dangers of creating a society when things are designed that only take into account data from half of the population.

I want my NHS to be designed and funded with my data in it and based on the best data available for the best outcomes of the population.

Anti-data, anti-vax

My challenge to the PR and media industry is that the anti-data movement is more dangerous than the anti-vax movement. Great data and digital is an extension of the human race and, managed well, it will save lives.

We need to lead with the facts and move on from the Luddite culture of faux data security that meant until recently the NHS was the biggest purchaser of fax machines.

We need open, honest and transparent conversations and engagement around data use in the NHS. We do not need political scaremongering.

To appease the complexity of discussing data in healthcare, there is an amazing programme called Understanding Patient Data. It has developed policy and comms materials around data sharing in healthcare.

Sharing data in healthcare can help to design services, develop better treatments, develop meaningful research, share records between GPs and hospitals.

Better data sharing will be business critical as the legislation for Integrated Care Systems moves forward, and our industry has a key role to play in ensuring that the debate around it is an honest and transparent one.

Rachel Royall is the founder of Blue Lozenge and former director of comms at NHS Digital



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