Should we monetise NHS data?

On Monday 10 February we held our second Great Debate, the topic; should we monetise NHS data? To start the evening, RSM President Professor Gillian Leng CBE spoke to the importance of accurate and timely health data to help those providing and managing the provisions of healthcare to deliver better patient care, but asked should the NHS be making money from it?

Two speakers argued that we should not monetise NHS data:

• Sam Smith, Policy and Lead Coordinator at MedConfidential
• Caroline Rivett, Former Partner, Global Cyber Security Life Sciences Leader

The two speakers speaking in favour of monetising NHS data were:

• Axel Heitmueller, Chief Executive Officer, Imperial College Health Partners
• Jonathan McKee, Head of Information Governance, Moorfields Eye Hospital NHS Foundation Trust

Ahead of hearing the speakers' arguments the audience was 61% for monetising data and 39% against.

The argument against monetising NHS data

Sam Smith based his arguments where the monetary value would come from in monetising data, and how in the long run, monetising data would actually result in less money for NHS budgets. He explained that “monetising data means third parties paying the NHS for data, which means they have to charge their customers more, which eventually means it comes from the NHS budget again. Pretty much every charge from the NHS in the UK on one hand, means the NHS pays higher prices in the end on the other, [healthcare budget holders] get less budget for the things that you want.”

He went on to give examples of how open-source data has resulted in some amazing patient outcomes, in the case of DeepMind and Moorfields, detailing how “people who would otherwise be blind, can now see”. He suggested that if that data were monetised then there would be lengthy issues around its ownership and that these patients would not have benefitted at the speed of which they did - ending by saying that “people would be blind, who could otherwise see.”

Caroline Rivett, was also arguing against monetising data, spoke about public trust and the huge complexities attached to what selling would entail. She started by outlining what data are we actually talking about, stating that it is not just electronic patient records, but also genetic data. Explaining that this genetic data is shared within families, so if one person were to opt into monetising their data, what would the implication be on other members of the family? She also spoke about the complexities around anonymising data, and how “we talk about anonymisation, and anonymisation makes it sound easy.” Then going on to explain that there is a hugely long and complex process that goes into anonymising data in order for individuals not to be identified. The other issue she outlined detailed the complexities that arose with selling data across international boarders and the legal implications this would have.

She finishes her argument by using a real-life example of a data leak from DNA testing company 23andMe. She said that while the data breach didn’t relate to people’s genetic data, as a result of, 23andMe is now being sold along with that genetic data. She questioned “who is that going to? Do those people who have actually given their personal data to 23andMe have a say as to who it is going to?”

The arguments for monetising NHS data

Dr Axel Heitmueller’s main argument was that the public are already on board with monetising data. From his own research he explained that the majority of an informed public agreed that if we are sharing data with a company that will then make discoveries from that data, why should we, the public who shared that data, not derive value from that?

He went on to explain the conditions on which this data would be monetised, stating that it would be extremely safe. Committees, that usually would include members of the public, would ask those requesting to buy data who they are. He then went on to explain that the physical data itself is not being sold, but the access to it. Using a library as an analogy, where someone would go to read the data, and leave with the knowledge from the data, but not leave with the physical data itself. He ended by explaining that with his research into the public view of monetising data, a vote against monetising data would essentially be a vote “against the informed view of the public.”

Finally, we had Jonathan McKee on the side of monetising data. In his argument he talked about the importance of “rejecting the idea of ownership”. Explaining how the notion of ownership implies that an individual should be able to control their data, which is unrealistic and could result in them inadvertently excluding themselves from process that serves their needs. He also stated that healthcare data is not a commodity to be owned in the judicial sense. “It is a collective resource, that when used ethically and responsibly can yield immense benefits for the greater good.” He made the point that by recognising that data have monetary value “we are not selling ownership, we are facilitating access to a data resource that can drive innovation, improve health care delivery and ultimately save lives.”

He describes the “virtuous circle” created in monetising data, one where we can improve patient outcomes and also create a surplus for job creation within the NHS. Explaining how this approach aligns with the fundamental mission of the NHS “to provide equitable healthcare for all.” Suggesting that the revenue derived from monetising data can be used to serve underserved areas, “ensuring that high quality care reaches the most vulnerable population.”

Opinions after the debate

By the end of the debate, the audience still were on the side of monetisation, now with 67% saying we should monetise NHS data and 33% saying we should not. The debate carried on on LinkedIn - here are some of the  comments:

Dimitri Varsamis shared his views on a few issues around data uses, quality, sharing and monetising as a driver for better change.

With regards to data sharing, he said: “At the debate it was argued that data misuse and breaches happen too often to use NHS income as the driver for sharing data. And I don’t disagree.

“But I often come across start-ups who have been compelled to use data from overseas locations. Of course, with the best possible protections, alike those the NHS would want to ensure that they would adhere to. But the NHS is that much slower at monetising its assets in ethical and safe ways.”

 One other LinkedIn user also said: “My take was clear entering the debate and perhaps even clearer coming out of it. The argument against monetisation is actually not an argument against monetisation itself, but rather, a valid challenge on the security, governance and controls around data monetisation and the route we take to get there. It is clear that we require a level of data fluidity and interoperability that we do not possess today. The real question is - can we afford not to?”

Rory Yates agreed with points raised by this user, and also added: “I went in knowing I had a degree of confirmation bias, but I kept a fully open mind and the debate on both sides was very useful. I did however come away with the over-riding belief that A. we are already sharing data so the NHS should take more value for this and B. that "monetising" it is about a lot of things, but it will likely improve quality, regulation and standards, outcomes and the general usage of that data if we approach it the right way - and if not the NHS in England then who?”

We would like to thank all those involved in taking part in the debate and will share details of what we will be debating next in due course. In the meantime, we want to hear what you think. Are you for or against monetising NHS data? Share your thoughts on LinkedIn, and make sure to tag us.