Call overview and agenda

An online discussion on the real world evidence studies was hosted on Wednesday 21 July 2021 (5pm to 6.30pm) via Zoom Pro and was attended by 26 members of the public from a wide range of backgrounds.

The aim of this particular online session was to:

• Introduce the Imperial Biomedical Research Centre and its proposed Digital Health Theme
• Provide an overview, and an example, of real world evidence and how it’s used in care and research
• Give attendees an opportunity to ask questions
• Facilitate small group discussions around the topic

Key Insights Summary

Attendees of the discussion session on 21 July 2021, provided their perspectives about real world evidence studies which were broadly centred around both the benefits of, and concerns about these kinds of studies.

Benefits
Attendees considered the benefits of real world evidence studies to include their advantage over clinical trials, including the potential speed of real world evidence studies and their ability to provide additional evidence to clinical trials. The fact that these studies are utilising an existing data resource and provide the opportunity to include wider representation of the population in studies e.g. pregnant women, disabled people, older and younger people were also identified as benefits. Attendees highlighted the benefit of real world evidence studies for rare disease and other research which may not usually benefit from adequate research and/or funding. Real world evidence studies were seen as also being beneficial to address health inequalities and social issues through using relevant data collected in a healthcare setting e.g. infections caused by damp houses, as well as for research areas like dementia which impact many people

These benefits were subject to certain things being put in place or being done including proper anonymisation of data, appropriate communication about real world evidence studies, use of other recognised data sources and the requirement for data quality guidelines. Attendees also noted that there was a need to be transparent about what data is used for and the need for consent to use real world evidence in studies including restricting third party access without consent.

Many attendees had an expectation that real world evidence was already being used for studies and should be.

Concerns
Attendees expressed some concerns about real world evidence studies: lack of understanding by the public about what real world evidence studies are, the quality of the data and type of information used in these studies, a lack of trust in research, the use of anonymised real world data by private companies and the financial gain from the sale of real world data by the NHS which does not filter back to patients to whom the data belongs.
Engagement about Real World Evidence

Attendees also suggested ways in which the public could be engaged about real world evidence studies including using multiple different channels, including establishing relationships with diverse communities and using different methods of engagement including using face-to-face meetings and interpreters. It was suggested that there is a need to build trust and confidence in healthcare and science in diverse communities especially since COVID. Simplifying the definition of real world evidence, as well as simplifying the messages about it and language would ensure understanding by the general public, addressing recent negative publicity about the use of patient data, being transparent about what the data will be used for, sharing information in accessible formats including infographics and on social media, and evidencing the benefits of using real world evidence in research including using anecdotes about real people and the impact.

How we used the insights

This insight report summarising key points from the session was made available to Theme leads and the BRC Executive in order to shape the BRC application. The report was also provided to the members of the public who took part in the involvement activity. A full report on all public involvement activities undertaken in preparation for the BRC application can be found here. Through the process of conducting this and other public involvement activities, we have established a wider and more diverse network of contacts for ongoing involvement. We would like to thank all those members of the public who gave their time and thoughtful insights through these activities, and the researchers who engaged enthusiastically in the process.