How Do People Feel About the Use of Data? summarises what we know about public attitudes to the use of patient data based on previous research. A report is available sharing key themes across studies published between 2010 to present day, as well as a video covering themes up until 2021.
It highlights themes such as how people feel about anonymised data (changing personal identifiers in some way, so that the data is not identifiable anymore) being used for health improvements and research. As well as concerns about commercial companies accessing health data and the importance of openness and public benefit in gaining support for data use.
This is a useful resource to help you understand public concerns and support levels regarding the use of patient data, which can inform engagement strategies and policy development. Supporting PEDRI’s Good Practice Standard 7: Creating a culture of involvement and engagement