Running through all of this is a wider principle: recruitment should be designed around what people would reasonably expect, not simply around what a system is technically capable of doing.
People should be able to understand how and why their information is being used, who can access it, how they have been identified and who may contact them.
This is especially important where recruitment depends on organisations, platforms or technologies accessing health information in ways that may not be obvious to patients as part of their usual care pathway.
In those cases, particular care is needed to ensure the approach taken is transparent and consistent with people’s reasonable expectations. Patients and the public should also be involved in designing recruitment approaches.
This is one of the most important messages from the report. Good governance is not just about finding a legally defensible route through a recruitment process. It is also about designing that process in a way that people can understand and trust.
That matters for inclusion too.
How searches are designed, which information is used and whether unnecessary gatekeeping occurs all influence who ultimately gets to hear about research.
That is why the report deliberately talks about giving people research ‘options’, rather than ‘opportunities’.
Taking part is a choice.
Our job is to make relevant research visible to people and give them the information they need to decide for themselves.
Taken alongside work to encourage research to be designed with and for the people it is about so they are able to choose to take part, this can really move the dial on increasing inclusion in research.