ORE Researcher Series: McMaster University

Posted July 20th, 2015 by

Last month, you met ORE researcher Tamara Kear, PhD., R.N., CNS, CNN, and you listened to her talk about her research on hypertension, one of the factors that can lead to a person developing kidney disease. Today, we’re introducing McMaster University Professor Gordon Guyatt and students Melody Ren and Reza Mirzaie. The question they are asking is “how are patients currently receiving bad news from a medical professional, and are the guidelines doctors have on delivering bad news actually correct?” Below, listen to the three researchers talk about their work and how the ORE platform and PatientsLikeMe made their research possible.

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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One Comment

  1. Hi Melody and Reza,

    I posted my thoughts on PatientsLikeMe when you first proposed your study. I believe you are starting with a false premise that will bias your research topic. In short, this concept of “bad news” is creating your bias. What makes something bad or good? Those are subjective terms. Who decided if this test result or diagnosis is bad, good or some other subjective feeling?

    Let me give you a concrete example of this. I went to see an eye doctor because I was having double vision. The doctor ran a lot of tests on me for about 2 hours. At the end he gave me his understanding of what was going on. He told me I have 20/20 vision in each eye individually. He said this presents more as a neurological issue than a vision issue. He never used subjective terms like good or bad.

    Okay, next doctor. I saw a great neurologist who took my personal and family history and my symptoms. She ran a lot of neurological tests on me. She sent me for 18 blood tests. She also scheduled me for an MRI.

    The MRI results confirmed what my neurologist already suspected. I was confirmed with multiple sclerosis (MS). She presented me with good scientific information about the disease. She also reviewed a number of available disease modifying therapies (DMTs) for MS.

    At no point did any doctor say to me, “I have bad news for you”. Why would a test result or a diagnosis be bad or good? It is just reality. How the patient feels about it us up to them. The medical professionals shouldn’t overlay a subjective value judgment of good or bad on top of that. In my case, my life improved tremendously after my diagnosis of MS. I could finally receive treatment. My symptoms could improve. My own “bad news” diagnosis was both a huge relief and a positive life changing event.

    Do you see? Your basic premise is asking the wrong question. The phrasing itself is wrong. You can’t get to the right answer until you can formulate the right question.

    So news is news. It is not good or bad unless the patients themselves decide to attach a value judgment of good, bad or otherwise to the news.

    I don’t mean to beat you guys up. I love people like you who dedicate their lives to improving the lives of people like me. You both are awesome! I just wanted to put you onto what I see as a more valuable and productive phrasing of your research question.

    Thank you for fighting the good fight! Keep chipping away at this. You are getting closer to the truth.

    Best regards,
    Charles D.
    Former member of PLM Team of Advisors

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