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Why it’s time to have a dialogue with the public about health data

The Scottish Government, together with Nesta, want to engage with citizens from diverse backgrounds and geographies from across Scotland, to develop a deeper understanding of citizens’ opinions and ideas for the use and sharing of health and care data. Building on our work on new methods of public engagement, we are launching an Invitation to Tender for partners to work with us to explore some of these questions over the next 12 months.

Health systems around the world are under huge pressure and the UK is no exception. An ageing population living longer with multiple chronic conditions is challenging the financial sustainability of the traditional delivery model. With 90 per cent of the NHS budget spent on treatment and care, we need to be thinking differently about how we can deliver services to meet the needs of the population. Smarter use of data is one way we can start to shift the dial to prevention and early intervention, as well as provide better joined up and personalised care for people.

We are at a critical juncture in the development of this data-driven health and care system, with a number of technological, social and economic factors at play that are influencing how this progresses.

Firstly, across the UK, plans are moving at pace to digitise and link health and care records through national programmes such as the Scottish Government’s National Digital Platform and NHS England’s Local Health and Care Record Exemplars (part of the NHS Long Term Plan). These welcome initiatives will provide the data infrastructure that will allow for joined up working across systems and will allow people to have better access to their data.

Secondly, the amount of health data being collected about us is increasing exponentially due to the growing information monopolies of technology giants like Google and Facebook, combined with the proliferation of health and wellbeing apps, wearables and platforms. The tools to make sense of this data, like artificial intelligence, machine learning and natural language processing, are also getting more powerful allowing us to gain new insights into our health.

Thirdly, the past couple of years have seen an erosion of the public’s trust in the use of their data in the wake of high profile scandals, particularly by private sector companies, such as Cambridge Analytica’s misuse of 73 million Facebook profiles to influence the US presidential election in 2016.

The health system is not immune to data scandals. In 2017, the Information Commissioner’s Office (ICO) ruled that the Royal Free NHS Foundation Trust failed to comply with the Data Protection Act when it provided personal data of around 1.6 million patients to Google DeepMind as part of a trial to test an alert, diagnosis and detection system for acute kidney injury. The investigation found several shortcomings in how the data was handled, including that patients were not adequately informed that their data would be used as part of the test.

Lastly, partly in response to this, there has been an interest in innovative data models and approaches such as personal data stores, blockchain and data commons, to name a few, but as yet limited understanding or systematic implementation of these potential solutions.

The importance of engaging the public

As more complex and personal data is held about us digitally, including genomic and biometric data, it’s becoming ever more important to build public trust around how data is used, both at an individual and population health level - now and in the future.

As well as building trust and protecting people’s privacy, we also need to have a more nuanced debate about the value of sharing data if we are going to unlock its benefits, not just for an individual’s care, but for others with similar conditions, as well as the clinical and research community.

It’s crucial that a diverse range of citizens have the appetite, opportunity and tools to engage in considered public dialogue about the uses of their data and the development of new data-driven technologies, and have a direct impact on public policy.

Public engagement approaches

There are many ways of asking the public their opinions on policy from polls and surveys to more deliberative methods such as citizen juries and mini-publics such as citizens’ assemblies. However, many ‘public engagement’ exercises can, at times, be little more than PR activities conducted relatively late in the decision-making process and without having real impact on policy making.

If governments, the NHS, local authorities and other public bodies truly have a desire to engage a wide range of diverse ‘publics’ in conversations about a data-driven near future, they must be willing to enable citizens to co-diagnose the issues and opportunities, develop a shared understanding, and collectively imagine preferred futures. Policy and practical action should then be aligned to help deliver these common visions.

Spearheaded by Wellcome Trust’s Understanding Patient Data initiative, there have been a raft of public engagement activities across the UK in recent years engaging ‘the public’ in how they feel about the use of patient data ranging from surveys to public dialogues and citizen juries.

Common challenges of these approaches are: how to move beyond engaging with the ‘usual suspects’ of engaged, expert patients to involving diverse publics; the need to embed public involvement more deeply in how we think through design, implementation and governance of data-driven technologies; and how to use methods that can support diverse publics to engage with questions about the future, while still being rooted in the present day.

Overcoming the challenges: new ways of engaging

There are examples of best practice from where public engagement has been done really well, and where it has tried to overcome the traditional challenges. Since 2016, the Our Voice Citizens' Panel has brought together people across Scotland to inform and influence key decisions about health and social care policy and services, and is an example of good practice. The Citizens' Panel was developed at a size that will allow statistically robust analysis of the views of its members at a Scotland-wide level, roughly 1,300 people from across all 32 local authority areas. Panel members were selected at random from the electoral register or recruited to be broadly representative of the Scottish population by gender, age, employment status, housing tenure, ethnic origin and geographic location. Panel members share their opinions using self-complete electronic or postal surveys or through telephone interviews. The third Citizens' Panel survey asked questions about digital technologies including using and sharing personal health and social care information. Findings from the Panel survey have contributed to the Scottish Government's Digital Health and Care Strategy.

In addition, deliberative engagement like the partnership between Genomics England, the Scottish Genomes Partnership and UK Research and Innovation's Sciencewise programme also point a way forward. The partners undertook a public dialogue in 2019 to explore public aspirations, concerns and expectations about the development of genomic medicine in the UK in order to inform healthcare policy-making in Scotland and the future of genomics more broadly.

Ninety-seven members of the public, and thirty experts took part. At the start, participants had a limited understanding of genomics: almost nobody had heard of a ‘genome’ or ‘genomics’. When introduced to the idea, however, almost all responded positively and many developed high expectations of genomics, envisaging a near-term future with new treatments and personalisation of care, and significant cost savings for the NHS. Almost all were relaxed about their health and genomic data being used in health research, provided that this was managed carefully. However, participants had some clear limits for how far they thought genomic data, and information derived from genomic analysis, should be used. These included genetic engineering, surveillance, administrative / political uses, predictive insurance tests and targeted marketing.

Creative or arts-based approaches, games and digital technologies, can also be a promising way of allowing people to explore alternative or possible futures in a safe way. The Nest is an interactive theatre production exploring how and why people's attitudes towards the sharing of data, health data and patient records can differ and at times conflict. It was commissioned by the NIHR Greater Manchester Patient Safety Translational Research Centre, written and produced by Stand and Be Counted Theatre and supported by Central Manchester University Hospitals NHS Foundation Trust. Based on the theme of sharing personal data and health information, The Nest was used as a way of introducing the topic to a diverse audience and to find out what people's perceptions and opinions are.

If you would like to get involved in this project, we’d love to hear from you. Please get in contact with Sinead Mac Manus, Senior Programme Manager, Health Lab.

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Sinead Mac Manus

Sinead Mac Manus

Sinead Mac Manus

Senior Programme Manager, Digital Health

Sinead is a Senior Programme Manager for Digital Health in the Health Lab.

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