Why did we do this?

We are at a critical point in the development of a data-driven health and care system. Health and care systems across the UK are moving at pace towards digitised and linked health and care records. Citizens increasingly expect that their information can be shared easily with professionals in their care and on what terms. The amount of health data collected about us across all domains of our lives, from our smartphones, wearables and online platforms is growing exponentially.

However, public trust in the use of personal data is at an all-time low in the wake of scandals such as Cambridge Analytica and the cyber attacks on organisations such as the NHS. 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. This programme built on the work of the Healthier Lives Data Fund in partnership with Scottish Government.

The goals of the Data Dialogues project were to:

• better understand the views, opinions and ideas of Scottish citizens around the use and sharing of health and social care data – now and in the future
• explore and co-design possible ways health and social care data could be used in future to benefit everyone
• test and evaluate innovative methods of engaging and involving the public in conversations about their data

What did we do?

Nesta worked with four partnerships to conduct the dialogues with Scottish citizens.

Using a range of participatory futures methods – including immersive experiences, online social games and speculative design – the partners engaged with diverse groups from different places, ages, socioeconomic and cultural backgrounds, as well as people with different health conditions and experiences of health and care services.

The majority of this work was conducted during 2020 and, as a result of the Covid-19 pandemic, the four organisations had to adapt their original plans to accommodate lockdown restrictions and social distancing. A fifth partner was unable to adapt their project to the Covid-19 restrictions and withdrew from the programme.

The four partnerships and their projects were:

• My World, My Health delivered by Health and Social Care Alliance Scotland in partnership with the Digital Health & Care Innovation Centre
• Fictional Pharmacy delivered by The Liminal Space
• Scotland on Mars delivered by Shift in partnership with Dartington Service Design Lab
• Care Data Futures delivered by Lydia Nicholas

What did we learn?

Findings from the four projects were synthesised and expressed as seven relationships that Scottish citizens have with health and social care data.

The data relationships includes both the way that a person shares and benefits from data, as well as their attitudes, understanding and beliefs around data sharing.

The seven relationships are defined as:

• Sharing is caring – people for whom the primary motivation for sharing healthcare data is to help the greater good
• See the whole me – want to be understood holistically, be treated without judgment, and receive tailored support
• Take me by the hand – might resist data-enabled technologies, fearing that they will replace the human connections they already have
• Win back my trust – people are wary of sharing data and think it will only be used against them
• On my terms – an uneasy relationship that can be improved by transparency over data use and the provision of simple data controls
• Is there an app for that? – people who already share a lot of data and want to be able to use it personally to get the best provision
• Give me fair access – people with sensory loss, dementia or different abilities for whom accessible technologies are often unavailable or people lack choice over how they share their data.

You can explore these relationships in more detail through an online interactive.

And find out more about the Data Dialogues programme and the partnerships by reading our reports.