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. 2025 Mar;72(3):e31474.
doi: 10.1002/pbc.31474. Epub 2024 Dec 15.

Partnership With Patient Advocacy Organizations Improves Research Recruitment

Lori Wiener  1 , Kimberly Buff  2 , Kimberly Canter  3   4 , Emily Pariseau  3 , Michele A Scialla  3 , Victoria Sardi Brown  5 , Anne E Kazak  3   4
Affiliations

Partnership With Patient Advocacy Organizations Improves Research Recruitment

Lori Wiener et al. Pediatr Blood Cancer. 2025 Mar.

Abstract

Incorporating and elevating the voices of patients and families is of utmost importance in pediatric psychosocial research. While recognized as a priority, this practice is not commonplace, and specific guidance regarding best practices and procedures is largely absent. This paper describes partnering equitably with pediatric oncology patient advocacy groups to conduct the Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study. The partnership was critical for all steps of the research process, including study development, refinement of the survey instrument, and recruitment procedures. We describe our overall approach, providing specific illustrative examples and highlighting opportunities for future growth.

Keywords: advocacy; childhood cancer; engagement; equitable care; family caregivers; partnership; patient advocacy organizations; psychosocial; recruitment; standards of care.

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Conflict of interest statement

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to report.

Figures

FIGURE 1.
FIGURE 1.
Psychosocial Standards of Care.
FIGURE 2.
FIGURE 2.
Outreach to fathers.
FIGURE 3.
FIGURE 3.
Outreach to communities of color.
See this image and copyright information in PMC

References

    1. Boaz A, Hanney S, Borst R, O’Shea A, Kok M. How to engage stakeholders in research: design principles to support improvement. Health Res Policy Sys 2018;16(1):60. - PMC - PubMed
    1. Paina L, Ekirapa-Kiracho E, Ghaffar A. Engaging stakeholders in implementation research: tools, approaches, and lessons learned from application. Health Res Policy Syst 2017;15(Suppl 2):104.
    1. Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ. Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer 2015;62 Suppl 5(Suppl 5):S419–S424. - PMC - PubMed
    1. Scialla MA, Canter KS, Chen FF, et al. Implementing the psychosocial standards in pediatric cancer: Current staffing and services available. Pediatr Blood Cancer 2017;64(11):e26634. - PMC - PubMed
    1. Scialla MA, Canter KS, Chen FF, et al. Delivery of care consistent with the Psychosocial Standards in Pediatric Cancer: current practices in the United States. Pediatr Blood Cancer 2018;65(3):e26869. - PMC - PubMed