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Equality, diversity and inclusion research

We want to make sure our trials are inclusive and accessible to everyone affected by cancer, no matter their background, ethnic group or personal circumstances.

When designing trials we work with investigators to make sure that as many people as possible are able to join and access the treatments we’re studying. We run trials in hospitals across the UK and beyond, at both large cancer hospitals and smaller regional hospitals, so that participation is not restricted to those in cities. We also encourage those involved in our trials at participating hospitals to offer the trial to as many people for whom the treatments might be a suitable option as possible.

However, we recognise that there is more to do, so we have a number of projects to investigate and improve equality, diversity and inclusion in cancer:

Equality, Diversity and Inclusion (EDI) in early phase trials

We are contributing to a study led by The University of Sheffield exploring the importance of equality, diversity and inclusion in early phase trials.

Equality, Diversity and Inclusion audit

We conducted an audit of trials led by ICR-CTSU which started between 2011 and 2021. The aim of the review was to see if we had any obvious issues in our trial protocols or supporting paperwork which would cause routine exclusion of any groups of people. We also reviewed whether we collected enough information about our trial participants to identify whether any particular groups were being excluded. We based our audit on the NIHR’s INCLUDE definition of under-served groups and reviewed protocols, patient information sheets, questionnaires and data collection forms.

Results were published in BMC Medical Ethics in November 2023. We reviewed 30 clinical trials. There were no systematic issues with our protocols’ inclusion criteria. Our patient information sheets had a reading age of 15-16 years and frequently used gendered terms. Although we routinely collected age, sex and ethnic group, we did not collect enough data to assess whether people may be in under-served groups identified by the INCLUDE project.

We have since updated our processes to try and improve readability of patient information and reduce use of gendered terms. We have a number of ongoing projects investigating other potential improvements, including working with patient advisors to expand our collection of demographic data.

Patel D, Kilburn L, Fox L, Hall E, Bliss J, Lewis R. Equality, diversity, and inclusion in oncology clinical trials: an audit of essential documents and data collection against INCLUDE under-served groups in a UK academic trial setting. BMC Medical Ethics.24(1):105. 2023

CASCARA - Costs And Supportive CAre in bReast cAncer

We are contributing to The Lancet Breast Cancer Commission working with Professor Charlotte Coles, Dr Indrani Bhattacharya and patient and public representatives on the CASCARA project. CASCARA will survey UK patients to explore their experiences of the hidden costs and supportive care needs associated with breast cancer. We are expecting initial results in April 2024.

Increasing representation of under-served groups in randomised bladder and head & neck oncology trials - MRC-NIHR Trials Methodology Research Partnership (TMRP) Doctoral Training Partnership

Our PhD candidate, Georgiana Synesi, began this project in 2022. So far, she has reviewed ICR-CTSU trial datasets, and conducted a scoping review of UK-wide trial eligibility criteria to investigate whether any under-served groups are being systematically excluded. She is currently setting up a mixed-methods recruitment study (REPRESENT) exploring who is invited to join trials, who accepts, and the reasons why. The study will involve a questionnaire, observations, interviews, and focus groups with newly diagnosed cancer patients, and the staff responsible for trial enrolment. The results from these projects will be used to develop interventions to improve representation of identified under-served groups.

SPRUCE - A Study within a trial (SWAT) of electronic versus paper-based Patient Reported oUtcomes CollEction

Our SPRUCE study is investigating collection methods for questionnaires completed by our trial participants. We are looking into whether online completion of questionnaires is as good as our current approach using paper questionnaires. We are continuing to offer participants the choice of paper questionnaires, rather than switching to electronic questionnaires for everyone. We will use the results of the SPRUCE study to confirm the best way to offer questionnaires to our trial participants in future. We will also investigate whether there are some groups of people who prefer to complete questionnaires on paper rather than electronically, so that we can make sure that this option is always available for those who want it.