Data is growing. How it grows is up to us.
Does big data provide an opportunity to improve the world? Can our personal info be used for nefarious ends? The answer to both is yes, potentially. Everyone should have an educated say in how we, as a society, use data.
The world is getting better at capturing and storing data. Now we need to get better at using it.
What does that mean?
Data collection has exploded in recent decades. More and more systems rely on it. The possibilities are endless, and neither exclusively good or exclusively bad. Data could, in theory, be used to improve or even revolutionise public services such as health and education,
It could also be used for reasons that are not beneficial, ranging from straightforward breaches of privacy to – like in so many novels and movies – suppressive social control. Those ideas are colourful, and entertaining (from the right side of page or a TV screen), and often extreme, but do represent threats that are possible, if things go a certain way.
To combat those threats and make the most of positive possibilities, all citizens (and civil-society organisations, and businesses, and any and every group with a theoretical stake in this issue – which means every group, full stop) need to have a say in how data is used.
Step forward, the Northern Ireland Public Data Panel (NIPDP), a pilot initiative took place to establish how a public panel, dedicated to overseeing the use of data in our general lives, would best work.
Over an eight month period, the NIPDP pilot worked with public participants and group representatives to thrash out how a full-time panel would operate. Late last year, the group published a report on their findings ahead of the establishment of a panel proper, recruitment for which is due to begin soon.
Once established, NI would join Scotland and Wales in having a dedicated public panel considering how data is utilised in research, innovation and making decisions that affect us all.
In her foreword to the report, Prof. Linnet Taylor, Chair in International Data Governance at Tilburg University, the Netherlands, writes: “The reason we need public data panels is because all data technologies are in fact public technologies. This publicness is often masked by the extent to which they rely on private infrastructures, but in fact any data infrastructure or dataset that draws on society, and whose analysis will impact society, is by its nature a public concern.”
That first sentence is an assertion, rather than an observation – which is what makes it so interesting. Are these public technologies? If we all want to have a say in how data is used and not used, they probably should be.
The rest of the quotation gets to both the good and bad side of big data. Use of our data is a public concern, and it should be of concern to the public. Making use of that concern requires access to information and understanding.
As for how data will impact society, it bears repeating that these impacts could theoretically be very good or very bad. Let’s choose the former. Again, that requires informed input from the public, which brings us back to access, of both information and understanding.
Which, taken altogether, makes the case for a public data forum. A place where the concerns of the public, of business, of academia, of charities and campaigning organisations and community groups, and the concerns of government can all be discussed, heard, and acted upon appropriately.
One area where data’s potential is clear, and largely untapped, is in healthcare.
There are also very obvious privacy concerns around using personal health information.
Dr Austin Tanney, Head of Clinical Information within Digital Health and Social Care NI (and with a background in data analytics more generally), also contributed to the report with a preface highlighting how data can improve health and care.
“Our population’s health and care data is critical to the continuity of their wellbeing. As we invest and evolve the way in which we collect, use and share information within Health and Social Care in Northern Ireland (HSC), we recognise that holding valued conversation with our population and our people to explain the benefits of data use in care delivery is key to trust, transparency and support for innovation that translates to recognised, measurable public benefit.
“Critical to our data journey is our HSC Data Strategy 2022-2030. This strategy describes our ambitious plans to make data more accessible, interoperable and usable in Northern Ireland. Within this strategy is our commitment to public engagement.”
He wrote further that a key part of the 2022-2030 Data Strategy is engagement with the public, including plans to “help inform and understand our population’s attitudes to using their health and care data”, with that better understanding then used to establish a “social license to guide the use of [the public’s] data for the wider good”.
We are in the early stages of data expansion. And, right now, that word – expansion – is key. So far the focus has been on pushing boundaries, increasing technologies, and looking at possibilities with an open mind.
In other words, it’s the wild west.
That won’t always be the case, whether the public at large takes a grip on how data is used or not.
The report says: “In the fast-paced environment of data innovation, the relationship between data owners, policymakers, technical innovators, researchers and the public, can sometimes become disconnected.
“Across various sectors and complex data ecosystems, those seeking to access and use public data are commonly required to show evidence of having engaged with the public. How this is done varies widely and often falls short of expectations of participation and transparency.”
The use of data is going to expand, whether the public likes it or not.
If we want to boost and embrace all the good bits, while maintaining individual rights and power in a world increasing powered by a waterfall of datapoints pouring into digital networks, we (meaning everyone) need to take ownership of the situation.
Finishing her foreword, Dr Linnet Taylor writes: “The public data panel proposed in the report is a hopeful and forward-thinking contribution because it treats public opinion and the experiences of affected people not as a bug, but as a feature. Too much of current ‘citizen participation’ is merely a rubber stamp on activities of government, industry or researchers: activities which will proceed regardless of the public’s feedback. A panel such as this is instead designed to be noticed, and to have impact on the way data is governed. It constitutes a warning system for Northern Ireland, where creeping opacity of systems, de-linking of public opinion from policy, or biased selection of feedback mechanisms can be surfaced and addressed. It also has the potential to develop into modes of contestation that are currently lacking in our data and AI economy.
“Particularly important in this report is the notion that representation is something that is constantly under construction. It must be tried, subjected to critique, reformed, and negotiated. ‘Staying with the trouble’, as one notable researcher… has described it. It is only through the proposal contained in this report – that representation must develop along with the publics involved, and must always be open to critique and contestation – that we can move toward a public data economy which is responsive to people’s needs and does not rely on top-down formulations of what is ethical. The ethics of data is always political, and this proposed panel offers a way of making sense of that.”
Keep an eye on developments here. The Northern Ireland Public Data Panel arrives with good intentions – but, given representation is “constantly under construction” the work for both the panel and the people it represents (i.e. you) will never end.
So, for now and the indefinite future, stay with the trouble.
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