Guest blog: Allison Roche on digital trade and privacy protections for UK citizens health data

As Big data use and Big Tech giants now emerge as the undisputed winners of the Covid-19 crisis our health and care data is at more risk than ever before. Throughout the pandemic there was a continuation to use e-commerce chapters in free trade agreements to protect the often untransparent use of AI and digitalisation in UK health platforms, apps and devices collecting our health data.

These digital trade rules in e-commerce chapters currently prevent the UK government from making any domestic UK regulations that would strengthen our data privacy rights in the collection and use of our health data. They also help to prevent a public debate on how we should regulate public service authorities to manage and steward the use of this public data collection for the public good and enable taxpayer benefits and returns from the value derived from public data.

UNISON, alongside Public Service International (PSI), representing 30 million public service workers in 700 trade unions in 154 countries, including 8 million public sector workers in the EU, are now raising alarm bells about the damaging implications this has for the democratic and just society values we uphold.

While the Covid-19 pandemic has led to an unprecedented health crisis and is predicted to have devastating economic impacts, tech giants such as Google, Amazon, Facebook and Apple are thriving. According to reports, the shares of major tech companies have outperformed the market since late January 2020.

Since Brexit the return of free trade negotiations and digital and AI domestic regulations have returned to the UK government and our sovereign parliament. Yet neither of these are devolved matters or sovereign matters as global trade rules are dictating what we can and cannot regulate.

Global institutions, some of which set the global digital trade rules and guidance, that we have now joined as the UK such as the WTO, OECD, G7 and UN are currently inert and passive on creating a universal and global set of AI and digital regulations that would balance our citizens rights and safeguard our health data but also allow the right conditions for AI and digital innovation and growth.

Discussions on AI and digital taxation, corporate responsibility and due diligence on high-risk AI use, algorithm and source code disclosure, limits on market access to public health data, patent monopolies, technology transfer to the global south, local presence requirements, regulated border flow of health data and discussions on building and running a public service health digital and AI infrastructure that maximised the public value of public health data are all being stymied.

The lack of transparency and knowledge about what is happening to our NHS data is concerning. Do we know how outside private IT contractors in our NHS run their IT operations? Why have we not insourced these operations? Where do they store our data – on their own servers or in the ‘cloud’? Where and who is the health data going to? Who owns the data and at what point is it patented? What do procurement contracts say about joint NHS access and control over the data?

This list of uncertainties will expand every week, as governments become more and more dependent on digital technologies and on the private IT companies that control the public health information and systems that run them.

Without proper global and even UK domestic digital and AI regulations we know that tech companies will not voluntarily self-regulate in favour of the public good, workers rights, data privacy rights and ethical and social safeguards. The continuation of tax evasion, mass breaches of human and data rights as well as manipulation of democratic elections and exploiting so-called ‘self-employed’ platform workers have shown us that.

Currently digital trade rules not only exacerbate the problem of tax havens but could also lead to the creation of data havens. Big tech companies want a guaranteed and unfettered right to collect health data and store, transfer, process, use, sell and exploit it anywhere in the world and they want to transfer and store data in their place of choice. That is partly for efficiency, so they can process bulk data without having to duplicate facilities and personnel – but as importantly so they can choose destinations that have the most favourable laws i.e. countries that do not regulate the internet and have weak consumer and privacy laws.

To protect our health data UNISON would like to see that all public services, particularly health and social care services that use data driven technology are removed from trade agreements and in particular in e-commerce chapters where IP, Patents and commercial and trade secrets are used to protect disclosure of AI and ADM technology and tools and devices. This would include medical devices, health data processing services and IT systems, trade in medical algorithms, data technology or other health and social care AI devices.

The UK government must exempt or ‘carve out’ e-commerce provisions in health and social care commissioning of data, health data processing services and IT systems for commissioners, analysts, and clinicians in relation to patient data, public health data and publicly provided social care data relating to UK citizens.

UK Public Procurement health contracts should include the right for public health services to demand source code disclosure and local data flows and local presence if it’s in the best public interest. Furthermore trade agreements and AI public procurement must specifically exclude NHS health and social care data from becoming commercially commodified and protected from ISDS mechanisms, ratchet clauses and standstill clauses.

The government should ensure that data access and the processing of UK public health data for the purpose of research, planning and innovation remains publicly or jointly owned and is not solely commercially owned.

This would protect public funded health data processing services for which NHS England/NHS Improvement and NHS Digital has policy making responsibility, from any form of data control from outside the UK. It would also ensure that the government retains control of access to health data for the purpose of research, planning and innovation according to its own priority policies and associated regulations.

Finally, health and social care workers need the government to implement new employer regulations to also protect their interests as there is increasing use and management of data and AI tools in the workplace. We would like the UK government to review its employment laws, health and safety laws, equality and human rights laws and training and skilling requirements for the health and social care workforce so that they are included and are core to the digital transformation of our health and social care services.

We want this to be accompanied with commitments in digital trade deals to safeguard workers’ rights by implementing International Labour Organisation (ILO) standards so that workers’ rights cannot be undermined by preventing any government, from regulating the emerging health care ‘gig economy’.

Allison has worked in a variety of roles in the public service before joining UNISON in 2008. In Education she worked as a Humanities school teacher, Psychology lecturer in Adult Education and a Team Leader of Expert Examiners. Leaving the education sector with an Msc in Environmental Planning Allison worked for seven years in the Local Government sector. Working in Community Planning in local strategic partnerships for regeneration and economic development, as a sustainable business consultant, EU social fund project officer, and a community inclusion planning officer. Allison joined UNISON in 2008 and worked as an Assistant National Officer in the Local Government team supporting and developing the bargaining and negotiation strategy of UNISONs 300,000 social care and home care workers. In 2012 Allison became a National Policy Officer working in UNISONs Policy and Public Affairs team. Allison’s policy portfolio is currently working on public procurement, digital and AI in the workplace, protecting public services and social provisions in post Brexit and UK trade deals and the public service response to Climate Change and the UN COP26.