It’s Inclusion Week, when we highlight the work going on across the Trust to make sure the communities we serve feel involved in our work. Senior research midwife Holly Lovell is part of the Guy’s and St Thomas’ Research and Development inclusion agent group. She told us why inclusion is so important in research.
At its heart, clinical research is about understanding the causes of ill health in the patients we care for, and what treatments are most effective for them.
To do this, we need research to involve a variety of patients, to ensure what we find out applies to everyone we might be treating. That can be more difficult than it sounds.
As more research is run in clinical settings, it has become more feasible to involve patients from a variety of backgrounds. But research as a whole still has issues to address.
A study looking at medical research taking place in the USA has found that research participants are often homogenous – primarily White and middle or upper class (Caplan & Friesen, 2017). A study in the UK found that people from White British backgrounds are 87% more likely than those from Black, Asian and Minority Ethnic backgrounds to have participated in medical research when controlling for socio-economic and demographic factors (Smart and Harrison, 2016).
We know that there are a number of groups that are under-served by research: Black, Asian, and minority ethnic populations; women; those with learning disabilities; age extremes; mothers; full time workers; people who identify as LGBTQ+; people with lower socio-economic status and migrants.
The reasons for this can be complicated, and for a single researcher, might be quite difficult to solve. Researchers need to be aware of language or cultural barriers and find ways to address them. Patients might feel mistrust or fear about taking part in research or providing information to researchers. It might simply be the time involved in participating that might be an issue – for instance if someone has caring responsibilities, or cannot take time off work to attend appointments. We know those issues affect some groups more than others.
But these are problems the research community needs to overcome, because the cost to our research is too high.
That’s why we have formed our inclusion group. We are staff who are inclusion agents within Research and Development, and are committed to supporting EDI at our Trust. We come from a range of backgrounds, and our primary role is as an initial point of contact for staff who have any concerns, as well championing the EDI agenda. As part of this we also want to ensure that our service users have equitable access to research.
We have gathered some resources for staff to learn and reflect on what they can do to help, such as using language line, or interpreters, or by using a range of channels to reach people who might want to be involved in research. Staff can also access training both on our Trust online learning environment, and the NIHR have shared resources on NIHR Learn.
Caplan, A and Friesen, P. (2017) Health disparities and clinical trials recruitment: Is there a duty to tweet? PLoS Biology. 15(3) :e2002040. DOI:10.1371/journal.pbio.2002040
NIHR (2020). Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE. Project https://www.nihr.ac.uk/documents/improving-inclusion-of-under-served-groups-in-clinical-research-guidance-from-include-project/25435
Smart, A. And Harrison, E. (2017) The under-representation of minority ethnic groups in UK medical research. Ethnicity & Health. 22 (1): 65-82.
NIHR Learn https://learn.nihr.ac.uk