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Study Highlights Lack of Diversity in Long-Term Health Condition Research

— May 6, 2024

Research shows health studies don’t showcase medical conditions in ethnic minorities.

Recent findings highlight a significant underrepresentation of ethnic minorities in health condition research studies including multiple long-term conditions (MLTCs), despite these groups being disproportionately affected. A systematic review, published in the Journal of the Royal Society of Medicine, has called attention to this gap, emphasizing the need for more inclusive research practices.

The review analyzed 13 intervention studies that together involved over 4,000 participants. It was discovered that only four of these studies offered any data regarding the ethnic backgrounds of their participants. This lack of detailed reporting points to a broader issue of ethnic minority groups being underrepresented in medical research, particularly in studies aiming to improve the management of long-term health conditions.

Additionally, the research highlighted biases in participant selection. Specifically, eight of the studies required participants to speak English or have access to a translator, potentially excluding non-English speakers from participating. Moreover, none of the studies made cultural adaptations to their methodology, such as providing translated materials or employing translators, which could have facilitated greater participation from diverse communities.

Socioeconomic status (SES) was another area of focus in the study, with findings showing that while 12 of the 13 studies reported on SES, the representation of lower SES groups varied due to differing measurement methods. Given that lower SES groups are more susceptible to MLTCs, the researchers have called for a standardization in reporting SES to improve consistency and relevance in research outcomes.

Study Highlights Lack of Diversity in Long-Term Health Condition Research
Photo by Klaus Nielsen from Pexels

The review showcases the importance of including diverse populations in health research, particularly those who are most likely to benefit from the studies. By not adequately representing ethnic minorities and lower socioeconomic groups, research fails to address the specific needs and conditions of these populations, potentially perpetuating health disparities.

Zara Kayani from the University of Leicester stressed that future studies on MLTCs need to focus on improving the recruitment of ethnic minority groups and ensure the accurate reporting of participant ethnicity. There is also a push for better representation of low SES groups in these studies, as interventions might be most beneficial for these communities.

Funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) East Midlands, this study not only sheds light on the current shortcomings in health research diversity but also suggests actionable steps towards more equitable health care research. The NIHR ARC East Midlands continues to support research that addresses regional health and care priorities and expedites the integration of research findings into practical health care applications.

The challenges in achieving diverse representation in health condition research are multifaceted. One major hurdle is the often-stringent inclusion criteria that can inadvertently exclude significant portions of the population. Language barriers, as noted in the reviewed studies, pose a significant challenge, especially in diverse societies where multiple languages are spoken. Furthermore, cultural nuances and the varying levels of trust in medical systems among different ethnic groups can also hinder participation.

To overcome these barriers, researchers must adopt more inclusive recruitment strategies. This includes not only translating study materials into multiple languages but also using culturally appropriate communication methods to reach and engage potential participants. Community engagement is crucial and can be facilitated by partnering with community leaders and organizations that are trusted by underrepresented groups.

This call for more inclusive research practices aims to enhance the relevance and effectiveness of health interventions across all societal segments, thereby reducing health inequalities and ensuring that all groups have equitable access to the benefits of research advancements.


Research shows underrepresentation of ethnic minorities in long-term health condition studies

Reporting and representation of underserved groups in intervention studies for patients with multiple long-term conditions: a systematic review

Under-representation of minority ethnic groups in research — call for action

A qualitative exploration of the barriers and facilitators affecting ethnic minority patient groups when accessing medicine review services: Perspectives of healthcare professionals

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