Engaging Black Women in Stress Urinary Incontinence Research Prioritization Through Intentional Recruitment and Alliance With Community Partners.

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Titel: Engaging Black Women in Stress Urinary Incontinence Research Prioritization Through Intentional Recruitment and Alliance With Community Partners.
Autoren: Pozzar RA; Dana-Farber Cancer Institute, Boston, Massachusetts.; Harvard Medical School, Boston, Massachusetts., Rangwala S; Section of Urology and Renal Transplantation, Virginia Mason Franciscan Health, Seattle, Washington., Wilson SN; Metro Atlanta Urology and Pelvic Health Center, Kennesaw, Georgia.; Black Health Matters.com., Deng DY; Metro Atlanta Urology and Pelvic Health Center, Kennesaw, Georgia.; Black Health Matters.com.; Kaiser Permanente, Oakland, California., Berry DL; Kaiser Permanente, Oakland, California.; Biobehavioral Nursing & Health Informatics, University of Washington School of Nursing, Seattle, Washington., Lee UJ; Dana-Farber Cancer Institute, Boston, Massachusetts.; Harvard Medical School, Boston, Massachusetts.; Section of Urology and Renal Transplantation, Virginia Mason Franciscan Health, Seattle, Washington.
Quelle: Urology practice [Urol Pract] 2025 Nov; Vol. 12 (6), pp. 658-664. Date of Electronic Publication: 2025 Jul 23.
Publikationsart: Journal Article
Sprache: English
Info zur Zeitschrift: Publisher: Wolters Kluwer Country of Publication: United States NLM ID: 101635343 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2352-0787 (Electronic) Linking ISSN: 23520779 NLM ISO Abbreviation: Urol Pract Subsets: MEDLINE
Imprint Name(s): Publication: 2019- : New York, NY : Wolters Kluwer
Original Publication: [New York, NY] : Elsevier Inc., [2014]-[2018]
MeSH-Schlagworte: Biomedical Research* , Black or African American*/statistics & numerical data , Patient Participation* , Patient Selection* , Urinary Incontinence, Stress*/ethnology , Urinary Incontinence, Stress*/therapy, Adult ; Female ; Humans ; Middle Aged ; Stakeholder Participation
Abstract: Introduction: Despite the disproportionate impact of stress urinary incontinence (SUI) on Black women and their underrepresentation in research, strategies for effectively engaging Black women remain underexplored. Here, we share insights gained from a Patient-Centered Outcomes Research Institute-funded patient engagement project on SUI in which increasing racial diversity of participants was prioritized and achieved.
Methods: A multiphase patient and stakeholder engagement project, conducted from June 2021 to November 2023, sought to train SUI patient partners and identify patient-generated priorities for research. Collaborating with community partners, purposeful recruitment strategies targeting Black women were employed. Key activities included surveying patient experiences, educational video training, and research prioritization surveys, all facilitated virtually.
Results: Initial crowdsourcing revealed low representation of Black women (6%). Collaboration with Black Health Matters increased representation in subsequent phases (ranging from 18% to 40%). Of the trained patient partners, 24% identified as Black. Ultimately, 16% of respondents to the research prioritization survey were Black. Collaborative efforts, including the dissemination of newsletter articles through Black Health Matters channels, significantly contributed to increased participation among Black women.
Conclusions: Intentional and collaborative outreach efforts, emphasizing education, trust-building, and transparency, successfully increased representation of Black women in SUI-related patient engagement activities. The involvement of community organizations, clinicians, and patients was crucial in ensuring diverse representation and amplifying underrepresented voices in research prioritization efforts. This collaborative approach can serve as a model for enhancing racial diversity in patient engagement initiatives across health care research domains.
Kommentare: Comment in: Urol Pract. 2025 Nov;12(6):664. doi: 10.1097/UPJ.0000000000000866.. (PMID: 41128378)
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Contributed Indexing: Keywords: Black women; collaborative outreach; health disparities; patient engagement; stress urinary incontinence
Entry Date(s): Date Created: 20250725 Date Completed: 20251023 Latest Revision: 20251114
Update Code: 20251114
PubMed Central ID: PMC12551411
DOI: 10.1097/UPJ.0000000000000857
PMID: 40709940
Datenbank: MEDLINE
Beschreibung
Abstract:Introduction: Despite the disproportionate impact of stress urinary incontinence (SUI) on Black women and their underrepresentation in research, strategies for effectively engaging Black women remain underexplored. Here, we share insights gained from a Patient-Centered Outcomes Research Institute-funded patient engagement project on SUI in which increasing racial diversity of participants was prioritized and achieved.<br />Methods: A multiphase patient and stakeholder engagement project, conducted from June 2021 to November 2023, sought to train SUI patient partners and identify patient-generated priorities for research. Collaborating with community partners, purposeful recruitment strategies targeting Black women were employed. Key activities included surveying patient experiences, educational video training, and research prioritization surveys, all facilitated virtually.<br />Results: Initial crowdsourcing revealed low representation of Black women (6%). Collaboration with Black Health Matters increased representation in subsequent phases (ranging from 18% to 40%). Of the trained patient partners, 24% identified as Black. Ultimately, 16% of respondents to the research prioritization survey were Black. Collaborative efforts, including the dissemination of newsletter articles through Black Health Matters channels, significantly contributed to increased participation among Black women.<br />Conclusions: Intentional and collaborative outreach efforts, emphasizing education, trust-building, and transparency, successfully increased representation of Black women in SUI-related patient engagement activities. The involvement of community organizations, clinicians, and patients was crucial in ensuring diverse representation and amplifying underrepresented voices in research prioritization efforts. This collaborative approach can serve as a model for enhancing racial diversity in patient engagement initiatives across health care research domains.
ISSN:2352-0787
DOI:10.1097/UPJ.0000000000000857