Being Part of Research: What to Expect Toolkit
Dr Nicole Thomas has recently completed a project focused on improving the inclusion of marginalised groups who are consistently missing from standard health data.
In the latter half of the 20th century, randomised controlled trials were considered the gold standard of empirical research. Initially, the results from these trials were generalised to all patient populations. Over the past few decades, however, growing evidence suggests that many groups excluded from clinical research can have distinct disease presentations or health profiles that affect how they will respond to treatment or therapy. The difficulty is reaching underrepresented groups, particularly those who are vulnerable or marginalised and who may be afraid to participate. While the project primarily addressed dementia prevalence in these populations, it also co-created a methodological toolkit intended not only to reach individuals experiencing multiple levels of disadvantage, but also to help them feel safer participating in health research.
The toolkit explains the purpose of population health studies, the necessity of certain questions, the consent process, and participants' rights. It was designed with the help of an illustrator, who transformed complex concepts into accessible visuals. Additionally, the toolkit cards can be translated into multiple languages using Google Lens. To learn more or purchase the toolkit, visit
Rosie Johnson Illustrates.
The project also worked with the London School of Economics to turn a platform used for evaluating homelessness services into a dashboard that shows dementia rates using publicly available data. This dashboard helps fill gaps in the data using community-level information to give better insights into brain health in aging, especially for underrepresented groups. It offers both high-level quantitative data and qualitative insights, aligning with the NHS's approach to reducing health care inequalities,
Core20PLUS5. For more information on the project, a
draft report is available on request.
