We have a moral duty to share our data
The majority of consumers would be happy to share their data with companies if it improved their experience, according to a recent survey. However, reality seems to suggest otherwise.
The health service launched a data sharing initiative, NHS Digital, in June this year. It would allow personal, but anonymised data, from doctors’ patient records to be added to a database so researchers could improve our understanding and diagnosis of disease. Many expressed fierce opposition to the initiative.
Data is the new gold. But we face significant challenges of how we consume, create and share data. The digital age has inevitably heightened our ability to be influenced by the media, the Government, and Big Tech. There has been a growing sense of mistrust, fuelled by the most high-profile events, such as the Cambridge Analytica scandal in 2016, which saw the data of over 87 million Facebook users harvested and deployed in political campaigns (including the Leave campaign in the Brexit referendum). During the pandemic, there has been a spike in misinformation and conspiracy theories being highlighted on social media platforms. Many people are now alive to the fact that in the eyes of social media networks and many businesses, individuals – and their data – are easily influenced, and easily monetised.
So it is unsurprising that individuals do not want their data to be sold to unknown for-profit parties. We should avoid knee-jerk anti-data sharing narratives, however. When done transparently, in the right circumstances and with the right actors, there is the potential for society to reap a huge benefit from sharing individual’s data.
If we stay with the healthcare example, when it comes to research, diagnostics and innovation, information has the potential to save lives. In 2020, India launched its National Digital Health Blueprint – a policy aimed at improving access to healthcare by increasing the effectiveness and efficiency of consultations based on technology and data sharing.
In countries with vast and varied geographies, large populations, but poor infrastructure and limited resources, data sharing is and will continue to be an important step in looking after populations at scale. Data has been a key weapon in the global fight against Covid-19, for example, it has been used to identify different variants of the virus and learn about variant’s specific characteristics in order to respond and develop effective treatments.
The importance of data from a political and macroeconomic perspective is evident too. In the next few decades, having access (or not) to large amounts of patients’ information for research and planning purposes will be one of the defining factors of how advanced a country’s healthcare system becomes. There is a risk this could lead to a healthcare “arms race” between countries, as Governments make it increasingly important for citizens to voluntarily share their data in order to maintain a strong position and not get left behind.
If the UK government and it’s big corporations want the public to be open to sharing their data, a necessary long-term solution is to build and regain trust. To do this, there must be transparency around the type of information they collect, how they collect it, how long it is being stored and kept secure, and ultimately how it is being used. By informing people every time their data is being used, Governments and corporations will have the opportunity to reshape the perception of data from a money-maker to something that has the potential to tangibly and positively impact people’s lives.
Therefore, data sharing is a means to regain power and act collectively as a society. When we have the knowledge and ability to actively “opt in” and understand what sharing our data can mean and to who, and when we are informed about the “what ifs” of data sharing, we are the ones with the ability to influence the Governments and corporations and Big Techs – not the other way round.
When harnessing these individual decisions, we as a society have the ability to take back power from those who do not have our best interests at heart, and make decisions that will ultimately give a platform to those that do.