Health and Social Care
Understanding attitudes to health and care data
In 2019, Nesta and the Scottish Government embarked on a dialogue with Scottish citizens to understand their opinions and ideas for the use and sharing of health and care data, and to explore possible futures with improved outcomes for everyone.
One of the aims of this work was to help inform the development of Scotland’s first Data Strategy for Health and Social Care and to ensure that Scottish citizens’ voices were enabled and supported to be at the heart of this. This joint project was called Data Dialogues and included different phases of work over the past two years, ranging from support for health tech innovators, direct engagement with citizens via creative and participatory methods as well as commissioned research and analysis. The findings of these various strands of activity have been synthesise into seven types of broad relationships that people in Scotland have with their health and care data.
These data relationships have been arranged by people’s attitudes and willingness to share data and whether they were driven primarily by personal or wider societal concerns. A data relationship can mean both the way that a person shares and benefits from data as well as their attitudes, understanding and beliefs around data sharing as a concept more generally.
Different data relationship types
The seven identified relationship types are not intended to be an exhaustive list, but rather to help describe the most thought-provoking and surprising aspects unearthed from the various Data Dialogues projects and consultation. The seven synthesised types of data relationships this work identified are described as follows:
- See the whole me: People might identify as part of several communities that intersect to give them a unique set of experiences that influence the care they want and need. They want their health and care data to be used to help them to be understood holistically, be treated without judgement, and receive tailored support.
- Give me fair access: The lives of people with sensory loss, dementia or different abilities can be transformed by data sharing. However, accessible technologies are often unavailable or people lack choice over how they share their data. Nonetheless, these services can offer a radical benefit, improve lives and are often positively viewed by those who use them.
- Is there an app for that? Many people, particularly younger people, are interested in getting the best health and care service they can. In this relationship type people might be active internet users, where they already share a lot of data. The most important thing in this relationship is for people to be able to personally use their health and care data, or feel its benefit in an improved or personalised experience.
- Take me by the hand: A lot of people value health and social care practitioners for not only medical care but also human connection. They might resist data-enabled technologies, fearing that they will replace the human connections they already have. They value familiarity and require personal guidance on sharing and benefiting from data.
- Win back my trust: We heard this from minoritised groups, people in care and people receiving Universal Credit. Many people think that data will only be used against them. In some cases this fear is abstract but others have suffered at the hands of the system, have experienced prejudice in health and care services and feel the system isn’t designed to help people like them. These people are wary of sharing data. The first step to improving this relationship is to acknowledge the existence of these fears and to address them in a genuine way.
- On my terms: Many people don’t have a strong need for data sharing health and care solutions and they don’t recognise a radical benefit to their lives. They are concerned with more general issues of autonomy, and worry about losing control of their own decisions. This tends to be an uneasy relationship but can be improved by transparency over data use and the provision of simple data controls.
- Sharing is caring: In this relationship, the primary motivation for sharing healthcare data is identified as helping the greater good in society. People in this category feel well-informed about the risks and benefits, either through their own research or through their own experiences. It is important for them to know how their data is being used to help people and that proper protections are in place to ensure an ethical and equitable system for managing their health and social care data.
It is worth noting that it is entirely possible for one person to adopt a number of different relationships with their data at different points in their life or in different circumstances.
An improved understanding of the relationships with data held by the public is an important step in laying the foundations for constructing and consulting on a new health and care data strategy that truly meets the needs and aligns with the different views and aspirations of people in Scotland.
Views of those voices are not heard as easily or as often as others
One area that required more detailed understanding, however, was in relation to those people in Scotland whose voices are not heard as easily or as often as others. It is vital that we give voice to their experiences and ideas on managing and sharing their personal health and care data to ensure that everyone’s views are represented in the development of the data strategy.
This led to a final strand of work, conducted by the creative consultancy Liminal Space, to directly engage with groups in Scotland that are underrepresented in traditional engagement or consultation methods. Over a series of workshops in January of this year, Liminal Space recruited diverse facilitators to engage with members of the LGBTQIA+ community, individuals with Black African or Caribbean heritage, East and South-East Asian heritage, Indian or Pakistani heritage, individuals living with disabilities and people with a non-professional carer responsibility.
The aim of this was to map the responses and insights from these workshops onto the original seven data relationships identified above, to produce richer and more informative insights. The full findings from this additional engagement work are now available on the new Digital Health and Care Scotland website and highlight important areas of consideration for Scotland’s health and care data strategy. These include: challenges around trust in institutions that collect and store health and care data, inequalities, empowering and facilitating citizen ownership of data, how data is accessed and navigated as well as how we must work to ensure data is collected, held and managed ethically, transparently and with consent.
The Data Dialogues work sought to engage with the Scottish public on some of the most complex, sensitive and urgent matters in relation to the future delivery of our health and care system. It has been challenging work, particularly in the context of a global pandemic, but has also been hugely rewarding and insightful. I want to thank all those project partners and members of the public in Scotland who have given so willingly of their time and opinions to inform this work.
The effective use of data in the design and delivery of Scotland’s health and care services can drive innovation and be truly transformative for improving people’s health outcomes and experiences. As such, it is crucial that we work to ensure the detailed findings and insights from the Data Dialogues project are fed in openly, transparently and effectively to inform the design and delivery of Scotland’s new strategy for health and social care data.