How do we really feel about sharing our health data? Changing attitudes across the lifecourse

Dr. Jonathan Foster

Information School

As part of the Tools for Life: Data Sharing and Public Health project, we engaged patients and the public in a dialogue about the benefits and risks of sharing their patient data for purposes beyond their own direct individual care.

In this talk I will introduce the Tools for Life project, its methods, and some of the key findings that emerged. While the public are willing to share their data for the benefit of public health, their willingness to do so is conditional on a number of ethical and information governance principles being met. We also found significant variations in attitude according to age group, with older groups more concerned about the ethics of sharing patient data and about data handling and sharing with organisations outside the NHS, when compared with younger groups.

I will explore these findings and discuss the implications on how we develop tools that will better inform patients and increase their confidence across the lifecourse.