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Methodology Monday April Roundup
As we progress in our Methodology Monday article spotlight, in April, we bring you strategies to increase inclusion in healthcare and clinical studies. This month the selection includes a couple of literature reviews but also publications that highlight the work to come out of key meetings that unite different stakeholders to discuss the inclusion of underserved populations.
A proactive initiative by a patient representative brought together researchers (including a member of our consortium), clinicians, charity representatives and people with myalgic encephalomyelitis (ME) (also known as chronic fatigue syndrome) to examine ME research and under‐served groups. Three particular challenges were suggested to account for disparities in awareness, research funding and adequate healthcare: stigma, lack of knowledge (within the general public, amongst healthcare workers and policy makers) and lack of power, particularly in improving current deficiencies. Closing with a call for funding, training and greater research this Methodology Monday looked not only at the a specific disease but the confounding effect of also being from an underserved population.
Methodology Monday this week zooms in on a scoping review, with contributions from a member of our consortium, aimed to identify evidence of published and good practices in health and social care research priority-setting activities, which included people from ethnic minority backgrounds. The 47 included studies were from 12 countries and covered various population groups and disease areas, spanning from 2010 to 2023, with a significant increase in the number of studies in the last 10 years. Still, the number of studies is considerably low from a global perspective, showing an overall lack of evidence and the need to advocate for more ethnic minority inclusion in research priority settings.
Breast cancer disproportionately affects ethnic minorities, with young Black women in particular experiencing poorer health outcomes. This literature review worked to identify strategies to enhance the racial and ethnic diversity of breast cancer trial populations. This resulted in eight key strategic themes, which were used to create a new Racial and Minority Growth (RMG) model. The model brings together recommended strategies from the literature, highlighting actions to be first tested and then integrated alongside current initiatives to enhance clinical trial diversity.
Actionable steps to promote diversity and inclusivity in trials were developed during a multi-stakeholder conference including representatives from U.S. Food and Drug Administration (FDA), National Institutes of Health (NIH), practicing clinical investigators, pharmaceutical and device companies, community-based organisations, data analytics companies, and patient advocacy groups. Three tables are presented detailing the steps.
