I recently attended one of a series of policy conferences on behalf of 2020Dentistry, titled: 'Utilizing data in healthcare - adoption, public trust and innovation.' It was organised by the Westminster Health Forum (WHF), and focused on the use of data in healthcare.  As a medic who is fully committed to digital data and its use in healthcare, I know that this topic is important, not just for healthcare professionals and strategic policy planners, but also for the general public.

In recent weeks, COVID-19 is exposing the cracks in the current system of data collection, usage and analysis for the public good. Moreover, it is a fact that not all key workers in the UK have signed up,  or know about how to submit their data to facilitate sharing their daily data of Coronavirus symptoms on the King’s College app.   

Could this low sign up reflect the general public's distrust of such a data collecting application?

According to the KPMG 2018 survey, the UK public: only 56% trust the NHS with their data, and just under half the population (44%) do not. Karen Lightning-Jones, the Head of Future Place at the Flatiron clinical research arm of Roche notes that most people believe that they have consented by default for their health data to be shared and used to advance our knowledge for better medication and treatment.

The WHF conference speakers are respected players from the NHS, private and voluntary sectors. Their presentations and discussions focused on the critical issues of transparency; the trust relationship between the data subjects; data controllers (the NHS institutes), and data processors such as pharmaceutical companies and research institutes.

This is how Professor Daniel Ray (pictured), the Director of Data, NHS Digital, summed up NHS strategy at the WHF event:

"So our strategy over the last couple of years around data, which we took to our Board in November 2016, is to try and realise the value in the data assets that we’ve got; and we’ve done a lot of work around the legal basis to be able to enable us to utilise some of the data assets that we’ve got. We’ve looked at content, how data can flow in different ways … Made sure that we’ve got the right infrastructure… that we improve and engage our customer base in a new and different way."

Indeed, there will be new ways to accommodate the divide between the UK data-subject (56% vs. 44%), by offering a secure, flexible transparent solution, that covers all age-groups, and all clinical conditions.

Smart cities are achieving this by building their marketplace of data, and this highlights the fact that we have to be serious in addressing the original question of data ownership, and the type of contract or accord between the data controller and the data subject.

Finding a Better Way

I believe that, in order for our health data to reach its full potential, it must be made available for scientific research, which in turn, will lead to new commercially viable cures, treatments, medical devices and services. The emerging democratising decentralized platforms for data preparation and processing known as Data Trusts or Data Marketplaces, examples of which can be found internationally, in countries where healthcare is partially, or fully subsidised, by the states using new advanced, secure technologies.

Solving the Remaining Questions

Finally, I think that the SHOULD ONLY and CAN ONLY era ends here, and the following questions remain to be solved:

Should only the data controller restrict the use of this data?

Individual Health data is an asset used for clinical trials or research during the subjects' life-time. Can’t it be used as an inherited asset with full rights passed on to another data-subject or organisation?

If this article triggered your curiosity, please spare a minute to answer this questionnaire on how much you know about your NHS digital health data this 3min survey:

https://docs.google.com/forms/d/e/1FAIpQLSfrCm-BwOls0YBoFmJC1EbrQQRDgN17lYDSMF0spfYS5HMScA/viewform?vc=0&c=0&w=1

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Further reading:

The security behind the NHS contact tracing app

In this blog post, Ian Levy explains how the new NHS COVID-19 app will help us fight the coronavirus while protecting your privacy and security (and not draining your phone battery).

1. In this blog post, Ian Levy explains how the new NHS COVID-19 app will help us fight the coronavirus while protecting your privacy and security (and not draining your phone battery). 
2. European Commission coronavirus toolbox