AMRC|Data can save lives in this pandemic, but it must be used responsibly

By Grace Melvin, Policy Officer, Association of Medical Research Charities

The vast potential of patient data

There seems no greater reminder of the value of health data than a global pandemic. The rapid spread of Covid-19 worldwide has brought the importance of collecting and linking up data centre-stage.

Graphs and dashboards have been created across the world to track the spread and impact of the disease. In the UK, both the public and the NHS have called for increased patient testing capability, in order to build a better picture of the disease and better equip the NHS to deploy its resources and protect vulnerable patients. It has become apparent that the UK’s route out of the pandemic will require the guidance of data-driven research, to better understand the virus, develop treatments and vaccines, and shape public health policy.

NHSX has recognised the value of data in this effort, revealing their plans for the creation of a data store to help the NHS utilise data in their Covid response. Other projects to enable data utilisation in the pandemic are also flourishing, as witnessed by the 2.5 million sign-ups to the UK citizen science app, which collects health data for Covid research whilst helping people manage their symptoms.

Getting the approach right

Balancing these enormous potential health benefits is the equally high risk of misuse, and the erosion of public trust in how data is used and shared which follows such misuse. Trust and mistrust could each thrive, depending on the approach taken.

The perennial ethical stumbling blocks around data use have reappeared during the pandemic, showing that ethical and appropriate use of data must remain central, no matter how altruistic the intentions.

This was brought into relief following the rumours of NHSX’s development of a contact tracking app to manage coronavirus. Prominent organisations and academics signed an open letter to NHSX and Matt Hancock, voicing their concerns over how the gathered data will be used and what safeguards would be put in place to protect it.

More recently, the Guardian reported on further worries that the government was not being open enough about the involvement of high-profile tech companies in their planned data store, adding to the growing evidence that transparency is crucial.

Public engagement and communication are indispensable

Citizens’ confidence that governments will use their data appropriately is fragile and highly sensitive to the public mood. We are able to be more philanthropic in the current climate: nobody can ignore the generosity and ‘all hands on deck’ attitude of the moment, whether in neighbourhoods or online. And people are generally more willing to share their data when they can see how it might help protect society.

However, despite the current goodwill, the trust placed in the NHS to handle and share their data appropriately and securely cannot be taken for granted. The topic of patient data is a highly sensitive one. Citizens must feel that they can trust the health and social care system to share their information with care and competence.

Public engagement is key to building understanding and confidence, and citizens have shown they want to be involved. Their red-lines and concerns should be listened to and acted upon: dialogue is a two-way street and must be meaningful.

Transparency is paramount

Clarity and openness about who has access to NHS data, under what arrangements it is used, and for what purposes is essential. For example, a (pre-Covid) survey found that only 20% of people feel sufficiently informed about how their data will be used. More than half of respondents feared they might subsequently regret giving permission.

In times of crisis, it is more important than ever that the public is informed of and reassured by the steps that the government is taking to safeguard their personal information. People want to know what is happening with their data, who has access, and how it is being used and protected.

Proportionate, reversible measures

As the Nuffield Council on Bioethics describes, public health measures need to be evidence-based and proportionate. This balance is achieved when the impacts on peoples’ lives and freedoms are minimised, whilst the measures remain effective.

Ultimately, all data sharing measures in the government’s Covid response must be fair and in the interests of patients. Governments must be clear on both how and when changes to regulation will be made, and that these changes will be reversed when the crisis is over.

In the grip of a pandemic, the interests of society, public and patients must be put above everything else. As much patient data as possible should be collected in the service of protecting patients, whilst maintaining transparency, trust and communication. And more care than ever is required to ensure privacy regulations are not eroded to the point that we cannot return to “business as usual”.