How do people feel about the use of data?
A number of studies have explored how people feel about the use of patient data. People are generally comfortable with anonymised data from medical records being used for improving health, care and services, for example through research, provided there is a public benefit. Many are uncomfortable with the idea of companies accessing their health data, and there are particular concerns about information being passed on for marketing or insurance purposes.
What are the best words to use when talking about data?
The current vocabulary for the use of patient data in care and research is complex and confusing and this acts as a significant barrier to building confidence. An important part of improving conversations about patient data is getting the words right, in a way that is accurate but also accessible and meaningful.
Sharing best practice
Please let us know what you have already done in the way of public and patient engagement activities to talk about data, and what you have planned. We want to highlight examples that have worked well, and share ideas among the community to help support future conversations. We also want to look at the most effective ways to improve transparency and give feedback about how data is used. We’ll be developing this area of the website over the coming weeks.