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Audrey Aegerter

    Sante Publique (Vandoeuvre-Les-Nancy, France)
    |June 19, 2023
    PubMed
    Summary
    This summary is machine-generated.

    Patient participation in medical conferences highlights epistemic injustice, where lived experiences of intersex individuals are undervalued. This research examines the impact of patient expertise on developing equitable healthcare models for disorders of sex development.

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    Area of Science:

    • Medical sociology
    • Patient advocacy
    • Epistemology in healthcare

    Context:

    • The 2005 Chicago conference marked a pivotal moment, inviting intersex activists and leading to updated medical management recommendations.
    • A shift in terminology occurred, with 'disorders of sex development' (DSD) becoming adopted for intersex individuals.
    • Historical controversies between patient organizations like the Intersex Society of North America (ISNA) and Organisation internationale des intersexes (OII) in the 2000s provide a case study.

    Purpose:

    • To qualitatively explore the implications of patient expertise in shaping new healthcare models.
    • To analyze the dynamics of patient involvement in medical conferences and policy development.
    • To understand the challenges and successes in patient-provider dialogues regarding disorders of sex development.

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    Summary:

    • Analysis of the ISNA-OII controversy reveals epistemic injustice, where intersex patients' knowledge is not equally credited.
    • Intersex individuals often face information asymmetry compared to health professionals, exacerbated by historical medical protocols promoting secrecy.
    • Organizational strategies in advocating for intersex rights can be ineffective or counterproductive, necessitating critical reflection on engagement with the medical establishment.

    Impact:

    • This study contributes to scientific discourse on the epistemological and political dimensions of patient involvement in healthcare policy.
    • It underscores the need for equitable recognition of patient knowledge in medical decision-making and research.
    • Findings inform strategies for more effective patient advocacy and collaborative development of healthcare policies for disorders of sex development.