Share data. Save lives - 4 min read

Despite the recent media storm around Facebook and Cambridge Analytica, people are becoming increasingly aware of the potential power of their data for good, as well as ill. In the last fortnight, there has been extensive media coverage of the new ‘Universal Cancer Database’ (UCD), set up by Australian businessman and philanthropist Andrew Forrest, to accelerate progress in cancer research. The UCD is expected to be fully operational later this year. In the UK, former cabinet minister Dame Tessa Jowell, suffering from brain cancer, has been one of the first to donate her personal data.

UCD’s positive media coverage is mirrored by strong public support for the idea of data donation. A recently released YouGov poll for the Association of the British Pharmaceutical Industry (ABPI) demonstrated majority support amongst the British public for the idea of donating personal health data to National Health Service (NHS)-sponsored medical research. Interestingly, 66% were in favour of the donation of personal data for research – more than the 58% and 57% for the use of blood and organs. The poll suggests that data donation might be a more appealing prospect to many than physically intrusive forms of donation.

These findings are similar to a limited number of other surveys on the subject in recent years. In an online survey in 2014, 60% of participants said they would be willing to donate their data to medical science. They just wanted to know their data was safe, anonymised and being used by trusted and well-known organisations.  

These qualifications of course lie at the core of the issue. The collaboration between Google’s ‘DeepMind’ project and various UK hospitals has created controversy because of the perceived absence of patient consent. In July 2017, the UK’s Information Commission censured the Royal Free Hospital in London for not explaining to 1.6 million patients that their data was being shared with DeepMind for a programme researching the management of kidney conditions.

When big institutions share the personal medical data of others without consent, then that is not data donation – however worthy the cause. But we should be careful to morally condemn the institutions involved too much, because the truth is that at present, the system favours inter-institutional data sharing. It is difficult for individuals to donate their medical data with a sense of ownership, proactivity or accountability.

Consider what it takes to make a donation of money to a charity. You need to actively know what funds you have, and be aware that there are charities you could donate to. The charities need to have an easy and secure means for you to deposit your funds, underpinned by an appropriate regulatory and legal framework that ensures that the funds remain secure, and not misappropriated.

In other words, there is a commonly accepted ‘way’ to donate funds. And this does not yet exist for medical data. For us to achieve that, three things need to happen.

  • First, individuals need to be aware of their medical data. They need to understand what and where it is, and who controls it. And they need to understand that they have personal sovereignty over it. To achieve this kind of awareness, medical providers – both public and private – would need to be encouraged, most probably by governments, to proactively supply the information to individuals.
  • Second, individuals need a mechanism to donate their data. This would probably entail a personal medical data ‘account’, accessible online, along with secure and intuitive platforms through which the data could be donated to approved medical research bodies. Technically there are no problems to achieving this, as distributed Cloud computing is more than capable of coping with the kind of volumes of data that would be donated.
  • Third, individuals need to be able to trust the system. One practical way forward is through ‘data trusts’ – repeatable framework agreements between data providers and consumers, promoted in a recent UK government sponsored report on the Artificial Intelligence Industry, by Dame Wendy Hall and Jérôme Pesenti. In the case of medical data, it is conceivable that individuals could form or join ‘data unions’ (not unlike the UCD), which offer their data to research bodies through just such a ‘trust’ framework.

So much of what we need to make medical data donation commonplace already exists. The data is there. The technology is there. The missing link is the framework that will provide reassurance to public opinion, and legal protection to individuals. People, hospitals and researchers are eager to play their part. We believe they should be allowed to do so – in confidence.

Not only is this a good in itself, but a further impetus to push the whole data revolution forward. Because as people increasingly realise that their data can make the world a better place, the more they will want to share it responsibly – for good causes, and yes, possibly for profit too. The two things are not necessarily inconsistent. Because of its high profile and obvious value, medical data donation has the power to be the catalyst for radical change in attitudes towards data.

It will not be before time.

martin yong