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Operationalizing Equity, Inclusion, and Access in Research Practice at a Large Academic Institution.
Britez Ferrante, Emma; Blady, Shira; Sheu, Dorothy; Maitra, Medha Romee; Drakes, Josiah; Lieberman, Adina; Mussell, Adam; Bair, Elizabeth F; Hearn, Caleb M; Thorbecke, Leo; Zhu, Jingsan; Kohn, Rachel.
Afiliação
  • Britez Ferrante E; Palliative and Advanced Illness Research (PAIR) Center at the University of Pennsylvania, Philadelphia, PA, USA.
  • Blady S; Palliative and Advanced Illness Research (PAIR) Center at the University of Pennsylvania, Philadelphia, PA, USA.
  • Sheu D; Palliative and Advanced Illness Research (PAIR) Center at the University of Pennsylvania, Philadelphia, PA, USA.
  • Maitra MR; Palliative and Advanced Illness Research (PAIR) Center at the University of Pennsylvania, Philadelphia, PA, USA.
  • Drakes J; University of Georgia, Athens, GA, USA.
  • Lieberman A; Palliative and Advanced Illness Research (PAIR) Center at the University of Pennsylvania, Philadelphia, PA, USA.
  • Mussell A; Xavier University of Louisiana, New Orleans, LA, USA.
  • Bair EF; Palliative and Advanced Illness Research (PAIR) Center at the University of Pennsylvania, Philadelphia, PA, USA.
  • Hearn CM; Center for Health Incentives and Behavioral Economics (CHIBE) at the University of Pennsylvania, Philadelphia, PA, USA.
  • Thorbecke L; Center for Health Incentives and Behavioral Economics (CHIBE) at the University of Pennsylvania, Philadelphia, PA, USA.
  • Zhu J; Department of Medical Ethics and Health Policy, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
  • Kohn R; Center for Health Incentives and Behavioral Economics (CHIBE) at the University of Pennsylvania, Philadelphia, PA, USA.
J Gen Intern Med ; 39(6): 1037-1047, 2024 May.
Article em En | MEDLINE | ID: mdl-38302812
ABSTRACT

INTRODUCTION:

Healthcare advances are hindered by underrepresentation in prospective research; sociodemographic, data, and measurement infidelity in retrospective research; and a paucity of guidelines surrounding equitable research practices.

OBJECTIVE:

The Joint Research Practices Working Group was created in 2021 to develop and disseminate guidelines for the conduct of inclusive and equitable research.

METHODS:

Volunteer faculty and staff from two research centers at the University of Pennsylvania initiated a multi-pronged approach to guideline development, including literature searches, center-level feedback, and mutual learning with local experts.

RESULTS:

We developed guidelines for (1) participant payment and incentives; (2) language interpretation and translation; (3) plain language in research communications; (4) readability of study materials; and (5) inclusive language for scientific communications. Key recommendations include (1) offer cash payments and multiple payment options to participants when required actions are completed; (2) identify top languages of your target population, map points of contact, and determine available interpretation and translation resources; (3) assess reading levels of materials and simplify language, targeting 6th- to 8th-grade reading levels; (4) improve readability through text formatting and style, symbols, and visuals; and (5) use specific, humanizing terms as adjectives rather than nouns.

CONCLUSIONS:

Diversity, inclusion, and access are critical values for research conduct that promotes justice and equity. These values can be operationalized through organizational commitment that combines bottom-up and top-down approaches and through partnerships across organizations that promote mutual learning and synergy. While our guidelines represent best practices at one time, we recognize that practices evolve and need to be evaluated continuously for accuracy and relevance. Our intention is to bring awareness to these critical topics and form a foundation for important conversations surrounding equitable and inclusive research practices.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Pesquisa Biomédica Tipo de estudo: Guideline Limite: Humans Idioma: En Ano de publicação: 2024 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Pesquisa Biomédica Tipo de estudo: Guideline Limite: Humans Idioma: En Ano de publicação: 2024 Tipo de documento: Article