I’ve previously suggested that patients and people from research sites should be involved in the design of trial protocols. Another useful element I’ve discussed recently with patient representatives is having patients embedded in the research team.

As well as obviously building a sense of togetherness and empathy, having patients involved in the operation of the trial can help with both recruitment and retention.

For instance, potential trial participants may be more likely to listen to someone they know has had similar experiences to their own, which can help encourage them to investigate taking part.

There can also be the motivation of ‘not letting their own tribe down’ which can keep people committed to staying on the trial.

And including patients can be beneficial for building up additional trust between trial participants and researchers, as well as having someone within the team that researchers can turn to in order to sense-check what they have planned.