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  • 1.  Twitter thread on listening to patients

    Posted 03-13-2022 12:21
    Thread on doctors not listening to patients. 239 comments at time of posting. Why is this so common?

    Patients generally attribute it to arrogance. Clearly there's more to it.

  • 2.  RE: Twitter thread on listening to patients

    Posted 03-13-2022 21:52
    We need AI computer programs that we better trust to keep us in order. Overall I think we are somewhat disordered!

    This to incorporate the changing regional disease frequencies and ways to sensibly move forward.using those frequency statistics,

    Is SIDM working with AI developers?

    Would welcome comments.

    Rob Bell, M.D.

  • 3.  RE: Twitter thread on listening to patients

    Posted 03-15-2022 14:05
    Thank you, Helen, for bringing this important issue up. This is what my work focuses on and something I care about deeply on a personal and professional level. Although I've lost track of the number of Twitter threads/postings on this.

    Not to be someone who promotes my own work, but my advisor and I just had a article published online today about this in the context of endometriosis (though I'm looking to expand to other patient populations). Routledge is giving 50 free e-copies here: https://www.tandfonline.com/eprint/FJCXZWAWFZKQ6BBJZFBC/full?target=10.1080/10410236.2022.2048468, though you can also access the standard link here: Healthcare Providers' Impact on the Care Experiences of Patients with Endometriosis: The Value of Trust.

    I'm always open to feedback on this topic of work, so if you (or others) have some, I would love to hear!


    Allyson Bontempo, MA
    PhD Candidate / Instructor
    School of Communication & Information
    Rutgers, The State University of New Jersey

  • 4.  RE: Twitter thread on listening to patients

    Posted 03-15-2022 15:10
    Thanks to Allyson for access to this article, which is of special interest to me as a kidney cancer research patient advocate.  There is a clear link between endometriosis and Hereditary Leiomyomatosis and Renal Cell Carcinoma (HLRCC), not only as to the nature of the growths, but also as to the poor diagnosis of both.  Since endometriosis is quite common in African-American women, this results in late diagnosis for those who may have HLRCC.  The latter is a subset of renal cell carcinoma, and lacks much research, usually occurring in younger women.

    When will doctors learn that most patients who are in pain do indeed have pain for some physical cause, and use that critical information to seek an appropriate diagnosis?  

    Peggy Zuckerman

  • 5.  RE: Twitter thread on listening to patients

    Posted 03-15-2022 18:44

    I just read your paper. Congratulations. The information you present is significant, validates what I've heard from every endometriosis patient I've ever interviewed or know personally, and is applicable to many other conditions with commonly long diagnostic journeys. 

    I hope it gets the attention it deserves, with wide distribution in medical practices, medical residencies, and healthcare administrations. I will share it with my Chief Medical Officer and have saved it for easy access to share with others. 


    Helene M. Epstein | Writer. Author. Advocate.

  • 6.  RE: Twitter thread on listening to patients

    Posted 03-15-2022 20:19
    General thoughts:
    I'm experiencing mild dissonance at seeing/reading SIDM engaging in affirmation bias.
    The only useful question here is:
    Where are these findings wrong?
    I assume all on this list are familiar with the research on errors in cognition, especially in psych areas, squarely within the purview of this question.
    There are myriad reviews to this literature base reaching the same conclusion.
    So ask here the same question you want asked elsewhere: WECIB. (What Else Could It Be.)
    (I'll give a hint at a later date; it's a really easy thought.)
    tom benzoni