Public Attitudes Towards the Sharing of Health and Care Information

Healthwatch Hertfordshire undertook research on public attitudes towards the sharing of health and care information as a result of their involvement with the information sharing workstream of the Better Care Fund Programme.  They undertook two focus groups and ran an online survey, reaching 102 people.

• People want to understand how the sharing of information benefits them using real life examples.
• People could generally see the benefit of sharing patient-level information in order to directly improve the patient’s care e.g. a GP sharing information about a condition with a hospital in order to make a referral. People were able to see the benefit of secondary information sharing to improve care at a service level e.g. sharing anonymised information with the commissioner in order to understand and improve performance. People were much less understanding about external secondary use of information where there is no clear link to improving care e.g. the suspicion that information is being shared with outside agencies such as insurance companies.
• There was an understanding that there will always be some level of security risk around the storage and transfer of a large volume of personal data. People said they wanted more honesty about the risks and measures in place to control this.
• Secondary use - people felt this needed to be more clearly defined and instead wanted more clarity about when and why this happens. The research showed a particularly low understanding of secondary use among younger people, with 60% of young people surveyed believing that information is not shared beyond people directly involved in their care.
• People wanted to feel that there is a robust regulatory framework to steer activity and ‘consequences’ when rules are breached.
• A lot of concern and anxiety seemed to come from people’s lack of knowledge and understanding of exactly what information is held about them and who sees it. There was concern that information shared is not always accurate or relevant to the situation. The research also suggested a lack of knowledge about people’s rights to view and challenge the information held about them.