Underserved groups remain underserved as eligibility criteria routinely exclude them from breast cancer trials

Moloney, Carolyn; Shiely, Frances

doi:10.1016/j.jclinepi.2022.03.011

Cited by 7 publications

(3 citation statements)

References 78 publications

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“…Differences in the patient's SES could determine access to HCC treatment. Access to new therapies and cancer treatments in clinical trials is generally restricted to expert centers in high-income regions, excluding patients from economically deprived regions [120]. Table 1 shows variations in HCC treatment and survival related to SES, material deprivation, and migrant background [21,27,32,[121][122][123].…”

Section: Access To Treatment and Survivorshipmentioning

confidence: 99%

Inequities in primary liver cancer in Europe: The state of play

Kondili,

Lazarus,

Jepsen

et al. 2024

Journal of Hepatology

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Section: Access To Treatment and Survivorshipmentioning

confidence: 99%

Inequities in primary liver cancer in Europe: The state of play

Kondili,

Lazarus,

Jepsen

et al. 2024

Journal of Hepatology

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“…There are several negative consequences to participant populations that do not look like the patients that could ultimately receive the trial's intervention. For example, the under-served groups may miss out on the opportunity of participating in trials, and trial conclusions cannot with certainty support treatment decisions for those underrepresented in the trial (Moloney & Shiely, 2022). Clinicians, and regulators, may be reluctant to generalise trial findings to the target population if they are not relevant for their context.…”

Section: Introductionmentioning

confidence: 99%

Effective interventions to increase representation of under-served groups in randomised trials in UK and Ireland: a scoping literature review

Biggs,

Dix,

Shiely

et al. 2024

NIHR Open Res

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Background Participants in clinical trials often do not reflect the populations that could benefit from the treatments being investigated. There are known barriers to trial participation for under-served groups, but limited evidence on strategies to alleviate these barriers to improve representation. This scoping review aimed to identify effective interventions and design features that improve the representation `of under-served groups in trials, focusing on the UK and Ireland. Methods We included methodological research studies that reported interventions to improve representation of ethnic minority groups, socioeconomically disadvantaged groups, older people, or those with impaired capacity to consent to randomised controlled trials, conducted in the UK and Ireland, published between 2000–2021. Systematic searches were conducted in November 2021 and data were independently extracted by two authors and narratively synthesised. Results Seven studies were included: one randomised controlled study embedded in five trials, one mixed-methods study, and five studies reporting ‘lessons learnt’ from one trial. We categorised the 47 reported interventions or strategies into nine broad themes: Recruitment sites, recruitment settings, community engagement, and communication with participants, incentives, inclusion criteria, flexibility, patient documentation, and the consent process. Only 28/47 interventions were evaluated, 23 of which were comparison of recruitment pathways. The randomised study found that a £100 incentive mentioned in the invitation letter increased positive responses overall across drug trials in cardiovascular disease and hypertension, but not for older people or those living in the most deprived areas. Invitation letters via GPs and working with communities were reported as successful recruitment pathways in recruiting different under-served populations. Conclusions Interventions aiming to improve the recruitment of under-served groups in the UK and Ireland were reported across seven papers, but their effectiveness was rarely rigorously evaluated. Included studies were context specific. Using a variety of recruitment methods is likely to help achieve a more diverse cohort.

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“…age, pregnancy, lack of other medical conditions) [ 18 ], inaccessible promotion and communication of trial materials (e.g. provision of written information in only one language) [ 12 , 18 , 19 ], negative financial impact [ 19 ], cultural barriers [ 11 , 19 ], participants’ perception of risk or ability to influence the research [ 12 , 19 ], fear of not being treated with dignity and respect, and mistrust of the healthcare system [ 11 ]. Indeed, empirical data has shown trust to be one of the most crucial factors impacting participation in biomedical research [ 20 ].…”

Section: Introductionmentioning

confidence: 99%

REPRESENT recommendations: improving inclusion and trust in cancer early detection research

Brockhoven,

Raphael,

Currier

et al. 2023

Br J Cancer

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Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.

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Underserved groups remain underserved as eligibility criteria routinely exclude them from breast cancer trials

Cited by 7 publications

References 78 publications

Inequities in primary liver cancer in Europe: The state of play

Inequities in primary liver cancer in Europe: The state of play

Effective interventions to increase representation of under-served groups in randomised trials in UK and Ireland: a scoping literature review

REPRESENT recommendations: improving inclusion and trust in cancer early detection research

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