Do you believe in support after sharing? A principles based approach to data sharing in essential services

Ignoring the rubbish reference to Cher (pronounced ‘share’ of course), the question in the title is a pretty important one. It was a key component in our recent research on the sharing of support needs across essential services we published last month. When deciding whether you want your information to be shared with your essential service providers, you need to know that it will actually make a difference. The idea that sharing should be proportionate and lead to clear benefits is one of six principles we have proposed to underpin this type of data sharing. 

We co-developed these principles with our Research Community, a group of over 5,000 people with lived experience of mental health problems, and other stakeholders. Here we outline how we developed the principles, how they guided our recommendations and how they could be put into practice.

We started by converting the concerns raised in our initial survey and focus group into  corresponding early ideas for principles. For example, where members were worried that they wouldn’t have control over their data a corresponding principle would be ‘ensure people have control and choose who has access to their data’.

We then engaged with a smaller group of Research Community members, known as our People’s Panel to further develop these initial ideas. People’s Panel members expressed their hopes and concerns about data sharing in essential services and then wrote a principle that would match.

For example, one member’s concern was that ‘data would be shared without my knowledge’ and their corresponding principle was that ‘permission would be required each time the data was shared’. From this we were able to categorise the large number of principles members created into a smaller group of eleven which included ‘fairness, equality and flexibility’ and ‘transparency and clear information’.

We wanted to understand whether these principles would also work for people in other circumstances beyond experiencing mental health problems, and if there would be any unintended consequences. So we developed a shorter list and tested these with a group of representatives from a range of consumer organisations and charities.

This discussion provided crucial feedback on some of our principles. For example, at that time we had a principle around trust – but roundtable participants felt trust should instead be an outcome created through the principles being in place. 

Finally, we refined the principles to create a final list:

1) Informed and dynamic consent – People should be able to give, revisit, and withdraw consent with confidence.

2) Control and choice – Individuals should control and have choice over what data is shared, with whom, and when.

3) Transparency at every step – Clear information on what data is shared, why, and with which organisations. 

4) Ethical and proportionate use – Only the necessary data being shared accurately and only used for agreed purposes, with clear benefits. 

5) Strong safeguards and accountability – Robust security, clear rules, and real consequences for misuse.

6) Inclusive design to be accessible for all – Should be designed with those with lived experience to ensure it works for everyone.

We never wanted these principles to be empty words, but a clear guide that would actually make a difference. As roundtable participants highlighted, these principles will help build trust among people with mental health problems.

We took two approaches to ensuring this. Firstly, we ensured that our recommendations to government and regulators will put the principles at the heart of the future of data sharing. For example, we recommended that they develop a framework to ensure there are shared rules, standards, and access to redress when things go wrong. When implemented, this would put our principle of strong safeguards and accountability firmly in place. 

Our other approach was to tackle the fact that there are currently a range of systems that share different data with different essential service providers in different ways. So we created a practical guide setting out the steps that could be taken by these systems now and by any future system or network of systems to embed our principles.

This includes allowing people to change their mind about who their data is shared with or using inclusive communication tools to explain how data sharing will work. One principle in particular – inclusive design – will help embed the others. We believe that people with lived experience should be involved in the design of these systems from the beginning and throughout their growth.

We’ve continued to engage with key policy makers since launching our report and will carry on  talking and writing about our recommendations and principles.