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27 November 2018updated 09 Sep 2021 5:03pm

Big data poses big questions for patients’ privacy

Data sharing can inform healthcare innovation, but first it requires a strict ethical code. 

By Chris Green MP

Data, data and yet more data. Technology has always been driven by knowledge, and our ability to acquire and amass information is accelerating. Profound change would once have been achieved by an individual genius or a chance discovery but we are now past that stage and no more so than in medical technology.

The opportunities of the fourth industrial revolution and big data are immense but do we have the tools not just to acquire, access and interpret that data but also to do so within a robust ethical and regulatory framework? How these frameworks are applied and evolve could, if too restrictive, hold back medical advances and give a competitive advantage to other countries but, if too lax, could undermine confidence, lead to failure and provoke a public backlash.

We all want to live longer, healthier lives but it is getting harder and more expensive to make each incremental advance. The synthesis and manufacture of aspirin followed centuries of people using extract of willow bark, but a new blockbuster drug from a pharmaceutical company may now cost over $2.5bn. 

The development cost is still going up, the 20-year patent life is eaten into during the development process and the applicability is becoming more niche, so the challenges for the traditional pharmaceutical industry are mounting up.

This is where a transformation in the way we use data can deliver better outcomes, improve targeting of treatment and accelerate the development of new treatments. Data gathering is increasingly not in a laboratory or hospital setting and is not just for professional use. Smartphones enable the acquisition and integration of real-time data into patient records as well as informing the patent. An app called Remora (Remote Monitoring on Rheumatoid Arthritis), for example, alerts patients to prevent “flare-ups” from becoming serious. This allows people to take control of the management of their own health.

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Naturally, this data can be used to develop treatment plans, triaging of outpatient appointments and provide a wealth of other information that will be of use to the patient, the doctor but also to companies and charities working in the sector. This then raises the question of the ethics, regulation and access of patient data.

The sharing of and access to data raises a wealth of questions, not least who is to benefit. Should your data, which helps the development of a new blockbuster drug for a corporation as well as massive profits, mean that you should have a cut of those profits? If not you, should charities or the NHS take a slice from the data the corporation has access to and how will it be worked out in a way that does not pour too much money into the pockets of lawyers?

The NHS has enormous potential as a data-rich resource for the development of innovative medical technologies. A national system that almost the entire population uses could present a wealth of longitudinal data when collected in a consistent and coherent way. As an organisation the NHS would have a moral authority when it comes to the use or commercialisation of data and, due to its size, the clout to negotiate and work with global corporations on a level playing field.

Unfortunately, it doesn’t quite work that way. We all know how difficult government finds delivering IT projects, but there is a strong sense that the NHS should be performing at a far higher level when it comes to using its unique qualities to develop new medical technologies. The fragmented nature of the data and the challenges of sharing it can be overcome but it will be an immense challenge. Perhaps though, Matt Hancock is the right man, in the right job, at the right time. His background in DCMS and his depth of knowledge of all things digital should mean that if anyone can deliver, it will be him.

Having dodged the question of Brexit so far, I cannot avoid it any more. This will obviously be challenging and far more needs to be done to give certainty over the relationship between the UK and EU institutions. We fully participate in the EU’s R&D programme and Horizon 2020 but do we want to wholly buy into the successor, Framework Programme 9, when it is likely to shift focus away from investing in excellence, where the UK has done well, and towards capacity building, which will give more of a boost to recent-accession states? Recognising the strength of British universities, research institutes and research-intensive charities, many of which are world leaders, it is in the interest of the EU nation states to maintain and enhance our relationship, just as it is for us in the UK too.

As a former engineer, having served on the Science and Technology Select Committee and currently chairing the APPG on medical research, it is abundantly clear how important personal relationships are in science. 

The members of different global scientific communities know one another as well as their work. Post-Brexit, we must ensure that our international relations are strengthened and our migration policy reflects this need.

Brexit and maintaining personal relationships are not the only challenges that lie ahead. New Statesman readers will well understand the concerns over civil liberties and the protection of an individual’s data. If we are too restrictive over it, the cost of developing the next medical breakthrough may be prohibitive, and so the next lifesaving drug or technique may never be delivered. 

Are we happy for the NHS to have our data? If so, can they use it in collaboration with a charity but not with a company? This complex situation would be impossible to navigate, so it would prevent the development happening here. In doing so, this would send companies, jobs and profits overseas, leading to the crippling our research-intensive sectors.

There are huge opportunities in medical research to build upon the advances we are already making, and we have every chance of taking them but so much hinges on our personal data being made available and used for the good of all society.

Chris Green is chair of the APPG on medical research.