The SAIL Databank is a data safe haven established in 2007 at Swansea University (Wales). It was set up to create new opportunities for research using routinely collected health and other public services datasets in linkable anonymised form. SAIL work in partnership with the HDR UK Innovation Gateway, making COVID-19 vaccination data available for research.
In your opinion, why is PPIE so important in health data research?
The importance of patient and public involvement and engagement (PPIE) in research and health data has grown significantly in recent years. Unlike many types of research that naturally come into contact with study participants as part of the activities, research relying only on the use of data can be more remote from the individuals that provided the data.
By involving patients and the public, SAIL can ensure that their health and social care data research happens with the public, for the public, so that the people of Wales have a key role in improving the quality and relevance of research.
Where has PPIE had an impact at SAIL?
SAIL established a Consumer Panel in 2011 to provide a public voice and gauge social acceptability on the work of SAIL. Members of the Panel provide input on many topics including discussing proposals for research and the implications of findings, providing views on data protection issues, and advising on how best to engage with the wider public.
A further impact of PPIE at SAIL is that three members of the Consumer Panel are also part of the independent Information Governance Review Panel which reviews all proposals to use SAIL data for research. They represent the public voice on data use alongside professionals from academia, government and health services, and help to ensure that a range of angles are considered in the review of data access requests.
What do you want to see in the future when it comes to involving patients and the public?
From SAIL’s experience with the Consumer Panel, we have seen that some members of the public may feel apprehensive joining an established group focused on what can be a highly technical field of work. People need to feel welcomed, to be encouraged to ask questions and be provided with accessible information. There is a need for PPIE activities to work hard to ensure everyone has the chance to provide their views.
It is also vital to remember that while members of the public might not have expert knowledge of health data research at the start, it should not be assumed that they cannot understand. It is important that people are given enough time to grasp information and consider their perspectives, and we continue to be encouraged by the keenness of citizens to engage with and make contributions to research and developments at SAIL.
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Patient and Public Involvement and Engagement
We work with and learn from the needs and experiences of members of the public and people using the health and care system. Patient and Public Involvement and Engagement (PPIE) is vital to our...