The subject of personal data and how external parties use it, is a topic that is continuing to garner much discussion within the public sphere. Public concern over data sharing came to the fore in 2016, when the UK government attempted to launch Care.data, a system to extract and link large amounts of data collected as part of NHS care. Following concerns over the opt-out system in place and over patient confidentiality, the scheme was first suspended, then closed.
With this in mind, it is no surprise that the planned launch of the General Practice Data for Planning and Research (GPDPR) programme has been deferred due to public concern.
To aid efforts to understand public attitudes to healthcare data sharing, Apollo Health Innovations partnered with The Patient Experience Library to ask the question, “What are the barriers and enablers for patients and the public participating in sharing personal healthcare data?”
In general, the public understanding of how personal data is used by external parties is very poor. Through the research it was clear that there is a lack of clarity amongst the general population on the legal, ethical and commercial angle external parties are using to conduct studies using personal data.
Public engagement is another factor that negatively impacts the public perception of data use. To facilitate data sharing, there is a clear need for education and dialogue. However, past experience has revealed some barriers. For example, poor planning, inappropriate language, as well as misinformation. Without a clear structure easily understood by the public, engagement in personal data studies will continue to struggle.
A key driver for concerns over choice and control is the question of data privacy. Questions of data security can negatively affect people's perceptions of how much control they have over their own data. There is a common fear surrounding third parties' motives on how they will use personal healthcare data and with hacking scandals being a common news bulletin, there has been little done to ease the public's concern. Concerns over choice and control could perhaps be mitigated by effective regulation. But that might depend on the extent to which regulation is seen as keeping pace with technological development.
Variations in demographics were also identified as a potential barrier. Gender, age and social status cannot be ruled out when it comes to engaging in personal data lead studies. Research suggests that these factors all add to the uptake and interest in taking part in such studies, with large percentages of the public having strong and opposing views. To get a more accurate picture of the UK population, strategies need to be put in place so that all demographics are reached and are willing to engage with future studies.
Evidence indicates that people are likely to support health data sharing if the reason for doing so offers clear public benefit. The genuine goodness in people cannot be ignored when it comes to any form of data analysis. If there is a promise of public benefit, or even a hope for public benefit, there is a large percentage of the population that would be happy to opt in to a personal data study.
Learning acquired from the Care.data scheme suggested that better quality information could have enabled public engagement and understanding. Information on data sharing should not be confined to the detail of specific government initiatives, but should be part of a more general process, whereby the public are active partners in the study. The public should have a clear understanding of the content of the study, and the pros and cons of participating in a personal data lead study. The public’s response suggests that a tangible and transparent approach to data gathering will increase the uptake in NHS studies.
Throughout this rapid literature review, it became evident that the overarching factor in the public’s perception of data use is trust. A key enabler for patient and public attitudes towards data sharing is the perceived trustworthiness of different organisations and professionals. It appears that trust is not distributed equally, and that trust is not given blindly by the public. There are also other influences surrounding trust, such as political and social context. The research shows that in order to garner positive public perception, the NHS need to ensure that the communication of personal data lead studies are transparent, universally understood and the public have definitive clarity on the risks and advantages in taking part in personal data lead research.
“The Apollo team were fast, professional and effective. Excellent service and invaluable support” - Miles Sibley, Director, Patient Experience Library
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