Following our April 2021 Citizens’ Jury on Access to Health Information, IPPOSI aimed to further explore public and patient attitudes around access to health information. Our latest report compiles the findings from two new surveys – one of patient organisation leaders, and one of patient organisation members. The questions we asked in these surveys mirror the questions we asked of the jurors involved in the Citizens’ Jury and we completed this research with the goal of better understanding where public and patient perspectives converge.
· Awareness of who has access to health information is worryingly low across the board with less than 20% of patient leaders, patient organisation members, and the public claiming to know “a lot” or “a great deal.” More than 50% stated that they know “nothing” or “a little” about who has access to health information, with the rest believing they know “a moderate amount.”
· Involvement of individuals in decisions about access to health information receives almost unanimous approval, with many reinforcing the position that individuals are the owners of health information and that individuals should manage how access to that information is shared with others for their direct care, and for secondary purposes.
· Safety of health information secures a relatively high vote of confidence, with almost 50% of patient leaders, patient organisation members, and public jurors indicating that they believe their information is moderately or well secured.
· Trust is still a work in progress, with many uncertain about providing health information access to certain stakeholders. For example, there is less trust in public servants than in researchers.