On my terms

We heard this from a broad cross section of society.

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 abstract 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.

People with this data relationship said

• We want to be in control of our own data sharing.

• We don’t understand how it benefits us to share our data. This makes us nervous and much more critical of sharing.

• Some of us are concerned about preventative care. It will only increase the burden on the NHS and increase our fears when we are actually well.

• We are most worried about the future. What if we are ruled by a Big Brother government? Or what if our data is misused in the future?

So what can we do?

Accommodating for people with this relationship to data might involve designing flexible systems that allow easy, case-by-case opt-out, or storing data locally so people can see what data exists about them and retain close control of it. It will also be important to provide education about controls, regulations and the benefits of data sharing so that reluctance to share data is not driven by a lack of understanding.