Navigating the Disappearance of DEI in Health Data

    Navigating the Disappearance of DEI in Health Data
    3:53

    navigating-disappearing-dei-data-in-medical-writingInequities related to income, race, education, language, and age can affect access to quality health care, health and wellness outcomes, and health literacy. Medical communicators play a crucial role communicating complex medical and scientific data and creating accessible health care content for various audiences.

    The disappearance of DEI-related content and data from federal websites and the inability to access these comprehensive datasets has impacted the medical writing profession.

    In January 2025, President Donald Trump issued an executive order aimed at dismantling federal DEI programs. These orders required federal agencies to eliminate programs promoting 'gender ideology' and to remove terms like 'transgender,' 'L.G.B.T.,' and 'pregnant people' from official usage. As a result, the discontinuation of these programs may have contributed to the loss of certain data tied to these initiatives. 

    Centers for Disease Control (CDC) employees were told to delete mentions of gender from their databases, and web pages related to racism in health and gender-based violence were also removed. One of the immediate consequences of this action was the removal of public health data from federal websites—data that medical writers and editors rely on to find evidence-based health care information.

    How this Affects Medical Writers

    Medical communicators translate medical and scientific information into clear, accurate content for public and professional audiences. Inclusive datasets help ensure that this information reflects the lived experiences and health outcomes of diverse populations.

    Without access to these resources communicators will face challenges producing accurate and inclusive content. Writers and editors will encounter gaps in data and there may be increased difficulty complying with current regulations and requirements for regulatory submissions, federal grant proposals, academic journals, and patient education materials. 

    Overcoming DEI Data Disappearance

    The Association of Health Care Journalists’ (AHCJ) Health Data Preservation Project has been tracking the disappearing federal health data and has created a website with resources for finding background reading and archived public health data. The organization has called for scholars and journalists to help preserve key data that has been removed or compromised in the current anti-DEI climate.

    Some of the resources listed by AHCJ compiling and archiving data include

    Alexandra Howson of the Write Medicine podcast has also created the CME Evidence Bank, a shareable spreadsheet with crowdsourced resources for writers in continuing medical education (CME) and continuing education (CE). 

    Moving Forward

    The current climate poses many challenges and uncertainties for the field of medical communication. By referring to these alternative resources and continuing to collaborate with research professionals, medical communicators can continue providing all people the resources they need to understand health information and take actions that help reduce and eradicate social, economic, and health disparities.

    AMWA acknowledges the contributions of Jodie Rothschild for peer review in the development of this AMWA resource

    June 18, 2025 at 9:15 AM

    American Medical Writers Association

    AMWA is the leading resource for medical communicators. The AMWA Blog is developed in partnership with community members who work every day to create clear communications that lead to better health and well-being.