The My World My Health project was delivered by the ALLIANCE and the Digital Health & Care Innovation Centre between November 2020 and March 2021. Its aim was to shine a light on the factors that contribute to our wellbeing, but aren’t necessarily ‘medical’ in nature. For example, we might all think of medications, doctors and hospitals as having an obvious impact on our health. We might perhaps even consider diet and exercise. But what about our employment, home life and even the community or society that we live in?

To understand more about the topic, see our opinion piece on this subject or listen to our project podcast (this link will take you away from our website).

The project was one of the four partnerships commissioned by Nesta (this link will take you away from our website) on behalf of the Scottish Government, to conduct dialogues with Scottish citizens on their approaches to data sharing and service design.

We discovered helpful insights through our workshops and a survey, including:

• Those living with sensory loss were highly likely to collect information about their daily habits, meetings, and commitments.
• People mostly preferred relationships based on trust where they were empowered to share such information themselves when relevant.
• People were more likely to consider data sharing if there was a clear benefit to themself, others or wider society.

You can explore all these insights, and more, by reading the full report. Along with this, Nesta has published reports from the other projects (this link will take you away from our website): Fictional Pharmacy, Scotland on Mars and Care Data Futures.

Findings from these projects have also been expressed in the form of seven relationships, that people living in Scotland have with health and social care data. Nesta has developed an interactive website (this link will take you away from our website) where you can explore these relationships in more detail.

Email us at DHCscot@alliance-scotland.org.uk if you have any questions about this project or if you want to receive further updates straight to your inbox.

The first step in managing any health condition is to detect it. If we can detect a problem early, then it should be easier to fix it. In an ideal world, assessment of health would not depend on one-off visits to the doctor or nurse. Measures of how well our bodies are working would happen throughout the day, but in the background, without interfering with daily life.

• Scientists from the University of Glasgow are developing new systems that could allow for continuous checking of health. A recent technology allows for non-obtrusive assessment of your heart’s rhythm and strength.

Another complex issue is trying to keep track of someone’s health and wellbeing. There are many situations where we may wish we could keep track of a person 24 hours a day. In an ideal world, healthcare would focus on monitoring for problems and preventing them before they happen. A powerful system could even detect the very early signs of medical conditions.

• Scientists from the University of Glasgow and Lancaster are also developing new healthcare systems which allow for continuous, remote monitoring of activity and movement.

These new technologies could transform healthcare, but there are still lots of questions that need answered before they could be used in the NHS. The team are looking for people give their opinions on the new technologies they are developing. All input would be hugely helpful for the team, and they can reimburse participants for their time and any expenses.

To find out more about the project and how you can help visit the QUEST team’s website (this link will take you away from our website).

The Health and Social Care Alliance Scotland (the ALLIANCE), Scottish Care and VOX (Voices Of eXperience) are working together to support the development of rights based digital health and social care policy and practice across Scotland. We are exploring a set of principles for a human rights based approach to digital health and social care.

Engagement

Between June-August 2021, we ran three online workshops to seek a wide variety of views on our draft Principles and how useful they might be. We talked to people who used digital services, those who provided services and support workers who engaged with digitally excluded groups. We also ran an online survey and produced an information pack to support organisations host separate conversations on this topic and submit their views.

Next steps

We have worked to refine the Principles based on what people told us. These ‘new’ Principles still follow the same themes, but are more concise and practical in nature. We will use these Principles to campaign for the better implementation of human rights principles in digital health and social care. We have also worked to identify practice-based examples of how they can be applied in real life scenarios.

Would you like to learn more?

If you work in social care, you can be rewarded for learning more about the Principles in the form of an SSSC Open Badge.

You can also check out an e-learning stack on the Principles here (this link will take you away from our website) and our educational poster here.

About the partners

Use the following links to find out more about the organisations involved in this work:

• The Health and Social Care Alliance Scotland (the ALLIANCE)
• Scottish Care (this link will take you away from our website)
• VOX (Voices Of eXperience) (this link will take you away from our website)

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