Data Dialogues

Sharing people's hopes and fears for their healthcare data

What

Immersive website

Client

Nesta The Scottish Government

When

2021

Services

People research

Creative outputs

As health systems become increasingly digitised, we need to to engage with people’s hopes and fears for their data privacy

The UK's health and care systems are rapidly moving towards digital and linked health records as citizens expect their information to be easily shared with professionals. However, public trust in the use of personal data is at an all time low due to scandals such as Cambridge Analytica and cyber attacks on the NHS.

In order to build a private and trusted healthcare system that works for everyone, there is a need to better understand the views, opinions and ideas of citizens around the use and sharing of health and social care data. This means understanding their perspectives on current technologies, as well as exploring those coming down the road.

We found seven relationships that Scottish citizens have with health and social care data

Nesta had previously commissioned four exploratory consultations with parts of the Scottish public to understand how different people relate to their healthcare data. These conversations used video games, workshops, and 'objects from the future' to elicit future-facing insights from participants.

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We were asked to make sense of these consultations, and to derive a series of useable insights drawn from across all four. The resulting data relationships capture 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 – people who want to be understood holistically, be treated without judgment, and receive tailored support
Take me by the hand – people who might resist data-enabled technologies, fearing that they will replace the human connections they already have
Win back my trust – people who are wary of sharing data and think it will only be used against them
On my terms – people who have 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

An immersive online experience to live the data relationships

We also developed an immersive website to share the learnings with the research participants and with the general public. The website takes visitors through an interactive and emotionally charged conversation from the perspective of each of the seven data relationships. We wanted to help visitors really experience these relationships, and make sure that our participants have been heard, valued, and not just reduced to a set of recommendations.

The interactive website was also the basis of a workshop with digital teams across the Scottish Government where we used role play and these immersive encounters to drive home these insights. People have complex and emotional relationships with their data and these must be accounted for in designing digital health and social care services.