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Direct to Patient Recruitment

Public Group active 1 week, 1 day ago

A sub-group of the Research Innovations Working Group (RIWG) to study the landscape of tools and resources around Direct to Patient Recruitment, evaluate existing tools and/or develop common tools, promote collaboration and promotion of tools across PCORnet, the RIC and beyond.

Annotations: PRIDEnet: Assessing Sexual Orientation/Gender Identity for Research

This topic contains 0 replies, has 1 voice, and was last updated by  Sue Friedman 10 months, 1 week ago.

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    Sue Friedman


    This resource by Pridenet is most relevant for Direct-to-Patient Recruitment. The resource can be found here:

    This resource summarizes and addresses some of the barriers to inclusion and reporting of LGBTQ/Sexual-Gender Minority (SGM) persons in research. Sexual orientation(s) and gender identities (SOGI) has been correlated with health outcomes but there is a dearth of systematic data collection in health studies that prevents understanding the differences, disparities, and resiliencies among SGM people.

    The article emphasizes that the fundamental concepts which are needed for advancing SGM health which includes that of lesbian, gay, bisexual, transgender, and queer (LGBTQ) people is the collection of SOGI metrics.

    Pridenet outlines the gaps, limitations, and inconsistencies among published measurements of SOGI which limits researchers’ ability to collect, measure and understand behaviors and outcomes and proposes solutions that may more accurately capture the data needed.

    Some of the guiding principles include:

    • Identification and clarification of domains needed to measure the outcomes of interest
    • Utilization of a range of response options that is not limited to traditional or binary choices, which may not measure the characteristics or behaviors you are trying to capture.
    • Allowing for free text description where needed
      • Example: “How would you describe your current gender identity?”
    • Consistency of domain definitions between the different questions/domains
      • Example – questions about sexual identify, sexual behavior, and sexual attraction should be consistent in how the gender categories are listed/described
    • These concepts may not be stable / applicable in other languages. Given how culturally associated concepts of sex, sexuality, gender are simple literal translation from English (of the United States) will be insufficient.

    Pridenet cites several examples of their assessment of questions published by The Williams Institute in “Best Practices for Asking Questions about Sexual Orientation on Surveys

    • Sexual behavior: the sex of sex partners (i.e. individuals of the same sex, different sex, or both sexes).
      Recommended Item: In the past (time period e.g. year) who have you had sex with? a) Men only, b) Women only,c) Both men and women, d) I have not had sex

      • Pridenet notes: This question is limited by a binary notion of gender, in other words, it only described having sex with men and women and there are more than two genders. Also, this obfuscates the fact that people who identify as women may have been male sex assigned at birth and have a penis. Or conversely that people who identify as men, may have been female sex assigned at birth and have a vagina. In other words it confuses sex (biology, physiology, anatomy) and gender (societal constructs of womanhood, manhood, or other genders). So, if understanding behavior is critical, asking about both the gender of sexual partners but perhaps most importantly specific sexual acts with specific genitalia will be important.

    Although this article focuses on the SGM research, many of the concepts could also be applied to other underrepresented populations.

    • This topic was modified 10 months, 1 week ago by  Sue Friedman.
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