Involving patients and the public from hard-to-reach groups in clinical trials

2014 Conference

Abstract: The Medical Research Council Clinical Trials Unit at University College London (UCL) is committed to involving patients and the public in our research. We are increasingly focusing on challenging and innovative studies. This often means working with groups that have not traditionally been actively involved in research, such as:

• heroin addicts who have been recently released from prison
• gay men who are at risk of being infected with HIV in the UK
• adults living with HIV in Africa
• adolescents living with HIV in the UK
• lung cancer patients with very short life expectancy
• women in Africa who are at risk of being infected with HIV

These groups can be hard to involve in research due to stigma relating to their condition or lifestyle, age, literacy, and other factors. The most common approaches to patient and public involvement (having patient representatives as members of the trial steering committee or trial management group) may not always be appropriate for these groups.

This presentation will explore how different trials have managed to involve these ‘hard-to-reach’ groups. Approaches used have included:

• working with voluntary organisations
• use of focus groups and community meetings
• webinars, workshops and conference calls with trial participants to inform future research plans
• use of social media

The presentation will reflect on some of the practical considerations involved in involving people from these groups, and the lessons we have learned so far from this experience. We hope this will encourage others to explore innovative and diverse approaches to involving people from ‘hard-to-reach’ groups in research.