A toolkit for capturing a representative and equitable sample in health research

Ameeta Retzer; Bircan Ciytak; Foram Khatsuria; Juma El-awaisi; Isobel  Harris; Laura Chapman; Tony Kelly; Jenny Richards; Emily  Lam; Philip Newsome; Melanie Calvert; Caroline Gillett

doi:10.1038/s41591-023-02665-1

A toolkit for capturing a representative and equitable sample in health research

Ameeta Retzer^*, Bircan Ciytak, Foram Khatsuria, Juma El-awaisi, Isobel Harris, Laura Chapman, Tony Kelly, Jenny Richards, Emily Lam, Philip Newsome, Melanie Calvert, Caroline Gillett

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

Abstract

Research participants often do not represent the general population. Systematic exclusion of particular groups from research limits the generalizability of research findings and perpetuates health inequalities. Groups considered underserved by research include those whose inclusion is lower than expected based on population estimates, those with a high healthcare burden but limited research participation opportunities and those whose healthcare engagement is less than others. The REP-EQUITY toolkit guides representative and equitable inclusion in research. The toolkit was developed through a methodological systematic review and synthesis and finalized in a consensus workshop with 24 participants. The REP-EQUITY toolkit describes seven steps for investigators to consider in facilitating representative and equitable sample selection. This includes clearly defining (1) the relevant underserved groups, (2) the aims relating to equity and representativeness, (3) the sample proportion of individuals with characteristics associated with being underserved by research, (4) the recruitment goals, (5) the strategies by which external factors will be managed, (6) the methods by which representation in the final sample will be evaluated and (7) the legacy of having used the toolkit. Using the REP-EQUITY toolkit could promote trust between communities and research institutions, increase diverse participation in research and improve the generalizability of health research. National Institute

Original language	English
Pages (from-to)	3259–3267
Number of pages	15
Journal	Nature Medicine
Volume	29
Issue number	12
DOIs	https://doi.org/10.1038/s41591-023-02665-1
Publication status	Published - 8 Dec 2023

Bibliographical note

Acknowledgments:
This study was funded by the NIHR Birmingham BRC (ref. NIHR203326, P.N.N.). We would like to acknowledge the contribution of J. Rose and the NIHR BRC’s equity, diversity and inclusion PPIE panel for their advice and support. We are also grateful to colleagues who attended our workshop and those who provided additional comments following the consensus workshop. The study funders and sponsors had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review or approval of the manuscript; or decision to submit the manuscript for publication.

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Cite this

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abstract = "Research participants often do not represent the general population. Systematic exclusion of particular groups from research limits the generalizability of research findings and perpetuates health inequalities. Groups considered underserved by research include those whose inclusion is lower than expected based on population estimates, those with a high healthcare burden but limited research participation opportunities and those whose healthcare engagement is less than others. The REP-EQUITY toolkit guides representative and equitable inclusion in research. The toolkit was developed through a methodological systematic review and synthesis and finalized in a consensus workshop with 24 participants. The REP-EQUITY toolkit describes seven steps for investigators to consider in facilitating representative and equitable sample selection. This includes clearly defining (1) the relevant underserved groups, (2) the aims relating to equity and representativeness, (3) the sample proportion of individuals with characteristics associated with being underserved by research, (4) the recruitment goals, (5) the strategies by which external factors will be managed, (6) the methods by which representation in the final sample will be evaluated and (7) the legacy of having used the toolkit. Using the REP-EQUITY toolkit could promote trust between communities and research institutions, increase diverse participation in research and improve the generalizability of health research. National Institute ",

author = "Ameeta Retzer and Bircan Ciytak and Foram Khatsuria and Juma El-awaisi and Isobel Harris and Laura Chapman and Tony Kelly and Jenny Richards and Emily Lam and Philip Newsome and Melanie Calvert and Caroline Gillett",

note = "Acknowledgments: This study was funded by the NIHR Birmingham BRC (ref. NIHR203326, P.N.N.). We would like to acknowledge the contribution of J. Rose and the NIHR BRC{\textquoteright}s equity, diversity and inclusion PPIE panel for their advice and support. We are also grateful to colleagues who attended our workshop and those who provided additional comments following the consensus workshop. The study funders and sponsors had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review or approval of the manuscript; or decision to submit the manuscript for publication.",

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A toolkit for capturing a representative and equitable sample in health research

Abstract

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