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10 Responses to “Would Relying on Patient Generated Data Make a Difference?”

    1. Terri Polson says:


    2. I fully agree, Kelly.

      That is the difference between text book RA/ other diseases & the real life RA.

      In fact, newer indices like RAPID are being developed & used now to incorporated the patient’s perspective.

      • Yes, I know they are being developed. Unfortunately too many “old school” docs may not change. Thank you for giving the patients a good example of a modern perspective.

    3. Terri says:

      I think the patient’s data is what’s most important! Only they can tell you what they feel, what is going on with there bodies. No one should ever judge or secound guess at another human beings illness, body, or life. That is just wrong. I’ve had that happen to me and almost lost my life over it. My third trip into the same ER with a hot gall bladder, and was still told,( you are just coming off of something looking for drugs, don’t talk to me about pain.) So YES, relying on patient generated data would make a BIG difference. :)

    4. Susan Feder says:

      I experienced this phenomena many times. This most significant was during the Social Security Disability process. I had to complete paperwork that involved explaining how RA affected the various areas of my life. I was denied twice, then involved my Congressman, Bill Young, in trying to get an expedited hearing. As a result, the judge that reviewed my SSD claim, wrote in his decision, that the doctors who sent letters on my behalf (which was after I submitted my paperwork) clearly supported what I had said and that should have been taken into consideration by those making the decision to deny me. As a result, the judge approved my SSD and I never had to have a hearing.
      RA wasn’t the only reason I received SSD but it certainly was the primary reason for me. My current rheumy told me that I was fortunate to be with the pain doc that I have since so many are trying to get away with shots only. They can’t give that many shots at one time and they don’t last when I do get them.
      I have been on the negative end of having my symptoms believed several times and I doubt any of the doctors and nurses who took that attitude with me ever suffered from any of the illnesses or diseases that I did. It’s very easy to say that someone is making too much of their symptoms when you have no idea what they are feeling. Everyone has a different pain threshold and it has been my experience that RA sufferers do not complain much, if any at all. If we did, that is all we would be talking about. There is only so much to say and the changes are so constant and in so many places, I’m sure that each of us could write a book on it. I’ve never had a remission in the 8 years this has been going on and never responded to the treatments.

      • Dear Susan, I’m glad it went through.
        & your second paragraph could have been written by me. And unfortunately, many others who write to me, as well. We have very strong constitutions after dealing w/ so much and doing it mostly in quietness.

    5. Belinda Langley RN says:

      It seems, especially lately, everyone seems to be in a hurry, and unable to listen to what is communicated. I just finished a 3 day stretch working in the ICU setting, and counted 18 times in those three 12 hour shifts, various health care professionals stated “yeah,yeah,yeah” with the quick nod, when a patient was speaking to them. I was an observer to the interactions. It demonstrates clearly that clinicians do not take the time to listen to patients, that patients read the unspoken signals “I’m too (busy, important, yada, yada), and so they feel less comfortable with asking questions” Sadly, this “yeah, yeah, yeah” has caught on quickly with people so it’s trendy. The message this sends me, is that it’s hip to appear impatient, busy, important.

      • Thanks, I never thought of it that way Belinda. When you’re the recipient, you tend to think it’s something about you (that you don’t appear sick or that your situation is just not serious enough to warrant attention), but when we observe it being done to other patients, we realize it’s more of a systemic problem. Like the opportunities we’ve had to observe interactions in the infusion rooms – seeing the same dismissiveness, etc.

    6. Bernadette says:

      As a retired clinician in the UK, we were taught that a good patient history was the foundation of good diagnosis and treatment. From personal experience I know that I saved both people’s lives and sight by picking up on something which they told me during the preliminary “how are things going’ part of the consultation.
      However, I know this is not the case with many clinicians. Why? I’m not fully sure- pressure to see too many patients in a day, the arrogance that sometimes goes hand in hand with experience, or distrusting what the patient tells you. In the thirty eight years of my career, I only came across a handful of ‘nutters’; most people were just the opposite – they were not sure if their observations were significant or not. A little encouragement often elicited profoundly important information that was crucial in forming an early accurate diagnosis. The same applied to patients I had seen routinely for years; a new symptom could point the way to a new development in the disease, or a completely new eye problem. Without the patient’s information, the new development might have been ignored for some time – never a good thing.
      There are only two courses of action, as patients, that we can take. Tell the doctor, and write it down and give it to the doctor, (better still email it to them – there is proof of receipt of the information once they open the email). The more clinical and empirical your reporst, the less likely they are to ignore them.
      The other course is litigation. There is nothing that improves clinical practice than a letter from a lawyer (I do not, happily, have any personal experience of this, but know clinicians who do!)
      Most of us do not go to doctors on trivial matters – it is crucial to remind them of this regularly, and to make sure that they take note of the follow up information we give them. Keep plugging away!

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