Public Attitudes Towards the Sharing of Health and Care Information
Background to the research
We knew that the sharing of personal information is an important issue for some people and that public confidence in NHS information sharing arrangements was low following the high-profile communications mishandling of ‘Care.data’ last year.
We wanted to find out more about what most concerns people in Hertfordshire with regard to information sharing; how their understanding of practice matches reality; and the most effective way of explaining arrangements to people so that they have the right amount of information at the right time to reassure them.
To do this we carried out two focus groups for the general public and ran an online survey specifically targetting young people.
The report with the findings was provided to the Health & Social Care Data Integration Programme Board.
Key Findings
- 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.
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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.
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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.
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People wanted to feel that there is a robust regulatory framework to steer activity and ‘consequences’ when rules are breached.
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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.
Next Steps
We asked the Health & Social Care Data Integration Programme Board to consider the following recommendations:
- Agree consistent messages and explore the idea of a distinct local brand for information sharing.
- Review the Hertfordshire literature (posters, leaflets, website content) in light of the framework that this research provides, and look to producing a standardised suite of material to be used across organisations.
- Seek a patient/public representative (possibly a participant from this research) to have an on-going role in supporting development of communication material.
- Review staff training regarding information sharing – ‘data protection’ is only one aspect, could training look at the positive messages and how to talk to patients about their concerns?
Read our report to the Health & Social Care Data Integration Programme Board here
If you require this report in another format, please get in touch.
