Data Privacy

How technology and personal data can be of critical assistance in pandemics without infringing privacy

Huge holes in the ability of countries to be able to respond quickly and in the most effective way when a crisis strikes have been brought into stark relief by the coronavirus pandemic sweeping the world trailing death and devastation in its wake.

Incidents such as Covid-19 create an unprecedented challenge for governments in terms of surveillance and tracking at the same time as creating a critical imperative to help individuals manage their life in terms of health and finances in a time of unprecedented upheaval.

The need for solutions which empower individuals and governments to do more with greater access to data without infringing on their privacy and freedoms has never been clearer or more pressing.

Defying norms

Responses to crises, and the intervention that follows, are usually informed by a combination of data, research and innovation.

However, this presumes time to collate and reflect before designing a solution – and the coronavirus has defied norms as it strides at speed across the globe, leaving no country untouched, taking thousands of lives and causing a global economic slowdown.

Tackling the virus requires immediate action so it can be contained as much as possible, while at the same time it is spreading at a pace not easily consistent with calm and considered reflection of the facts in order to arrive at what that response should be.

But this is exactly where data is well placed to be the solution

We are more awash with data than at any time in history, and yet we have not been able to leverage this to effectively respond.

Serious attempts have been made to join up the dots – many countries, including the UK, have approved the use of phone data by public bodies because of the impact it can have on public health, such as by helping to check whether people are adhering to the social distancing that is key to stopping the virus from spreading, for example.

But to effectively lead the effort against coronavirus, decision makers need to have all the relevant information – data – at their fingertips. And that means finding new ways – or utilising existing ones better – to join up many, many more dots – across all sectors and societies, right across the globe.

The European Commission’s Expert Group on Business to Government Data Sharing said in February that “much of the potential for data and its insights to be used for the benefit of society remains untapped” within the EU, and that “due to organisational, technical and legal obstacles (as well as an overall lack of a data-sharing culture) business-to-government (B2G) data-sharing partnerships are still largely isolated, short-term collaborations.”

To try and kickstart this, when it has never been more desperately needed, over 300 people working to responsibly harness data’s potential to address critical societal and challenges have signed an open letter calling for more data collaboratives to fight threats such as coronavirus.

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The letter, which gives many examples of how infectious diseases have been monitored using mobile phones and mobility data, including Ebola in Africa and swine flu in Mexico, calls for the ‘supply and demand’ of data and data expertise across government, the private sector and civil society to be more effectively matched.

The letter says: “Much data needed by researchers is never made accessible to those who could productively put it to use while much data that is released is never used in a systematic and sustainable way during and post crisis.

“This failure results in tremendous inefficiencies and costly delays in how we respond. It means lost opportunities to save lives and a persistent lack of preparation for future threats.”

While tech companies, including Google and Facebook, are already stepping up to help, the letter notes that most existing efforts are “ad hoc, poorly funded and often disconnected from key decision makers who can act upon insights generated.”

The letter adds: “There is also no strategy on how to connect and transform the energy, expertise and resources provided today in a new data driven approach to address future public threats, including fast-developing public health and climate crises.”

The signatories are calling for seven actions to make data collaboration systemic, sustainable and responsible, including developing a governance framework, building capacity, establishing data stewards, engaging people, unlocking funds and promoting technological innovation.

A new way forward

Clearly, what has worked before is no longer sufficient in the face of an extreme disruption, and we need to find a new way forward, driven by data to help better prepare for the next pandemic and other crises, such as the climate emergency, that we know are coming.

Never has it been more important to work together for the greater good, innovating collaboratively and sharing data while respecting privacy, transparency and consent as much as possible.

Digi.me’s mission to empower individuals with data from across their lives has always been designed to enable a new world of information sharing in which the sum of different data streams holds more value and insight than individually.

So we wholly support moves to galvanise data collaboration on a global and never-before-seen scale, and the safe and rapid adoption of new technology, apps and services to support this.

Unlocking the power of data, whether that is by empowering individuals with better tools to better understand their own circumstances, or being part of national or global efforts to create a safer world for all of us, is how we become better prepared and better able to respond to emergencies when they happen. And so that is what we must do, with urgency.

We stand ready to serve or help in any way that could be useful, now and in the future.