A framework for quantifying the equity of access to healthcare research has been developed at UCLH and UCL.
The framework is designed to enable hospitals to ensure all groups have the chance to participate in, and benefit from, research.
In a paper published today as a preprint, UCLH and UCL researchers describe use of the framework to calculate how deprivation impacted research access at UCLH over the past two decades.
They looked at data from 54,593 participants enrolled in research studies initiated at UCLH between 2001 and 2021, and used the geography of participants to evaluate the extent of deprivation in areas they were recruited from.
Each geographical area was associated with measures of deprivation published by the UK government. These measures are based on detailed statistics on education, crime, employment, disability and many other factors. Areas with and without recruitment were compared statistically.
Participants came from widely across the UK – with around 21% of participants from outside Greater London, covering 31% of the area of England – demonstrating the national reach of UCLH research– and from areas that varied widely in terms of deprivation levels.
The team found that research studies were not substantially biased in terms of populations they drew from in relation to levels of deprivation. In fact, there was a slight trend towards study recruitment from more deprived areas of the country.
The same framework could be used to measure equity in research in terms of other factors including age, gender and race.
Nick McNally, Managing Director, Research UCLH/UCL said: “We strive to make participation in research at UCLH/UCL open to everyone, so it is fantastic that this project has highlighted the national reach of our clinical research and established that patients from areas with higher levels of social deprivation across a range of indices are just as likely to participate in research as those where levels of social deprivation are lower.”
The framework established in this work could be used before and during research studies to continually assess research access – not just after research has taken place. This makes the framework a potentially useful resource for research and development departments to better understand access to the research portfolios that they manage.
Participants included in the analysis were those who had taken part in ‘primary’ clinical research studies – where identifiable patient information is available. Participants from studies which used anonymised data were not included.
Read the paper published in Wellcome Open Research: Enrolment in clinical research at UCLH and geographically distributed indices of deprivation [version 1; peer review: awaiting peer review]
