Would Relying on Patient Generated Data Make a Difference? | Rheumatoid Arthritis Warrior

Would Relying on Patient Generated Data Make a Difference?

Discrepancy between patient generated data and clinician reported data

Recently on the blog, I mentioned an oft-quoted study which suggests that the disease course for Rheumatoid Arthritis is becoming milder. Something puzzled me at the end of the report. The researchers noticed that Rheumatoid Arthritis patients’ ratings of their disease activity were opposite to that of clinicians. Can you guess which way the discrepancy leaned? Do you think the patients or the clinicians rated disease activity as worse? I wondered out loud why the discrepancy exists and whether anyone is studying that.

Yesterday, I told a personal story about how a lady doctor saved my son’s life after several pediatricians almost cost him it by refusing to listen to my reporting of his symptoms. Every day, I read emails and comments from Rheumatoid Arthritis patients who have had problems getting doctors to hear or believe or understand what they are communicating about their symptoms, often delaying diagnosis and treatment. These personal stories may be anecdotal evidence, but are vivid illustrations.

Of course there are not clear statistics about how many doctors are accurate listeners any more than there are numbers on how many patients are accurate symptom reporters. What is clear is that an information gap does exist. And that it’s not a healthy thing.

Doctor supports patient generated data via “patient-reported outcomes”

Last month, in the New England Journal of Medicine, oncologist Dr. Ethan Basch published his findings in a report called The Missing Voice of Patients in Drug-Safety Reporting. Dr. Basch examined the ways that data collected directly from patients differs from data generated by clinicians’ interpretation of patients’ symptoms. He points out that, “In fact, patient self-reporting as a data-collection method was recently embraced by the FDA…” However, Dr. Basch explains that “patient-reported outcomes” are not being used to collect data about adverse events (side effects) in trials for new medicines even when patient testimony is used to support claims (benefits) of drugs.

I hope you will look at his report and his power point slides. They clearly demonstrate from cancer research “that patients report symptoms earlier and more frequently than do clinicians” and that “patients’ reports are more highly concordant with overall health status than clinicians’ reports.”

More on Dr. Basch and patient generated data in The New York Times

This week, The New York Times published an article about Dr. Basch and his work: In Reporting Symptoms, Don’t Patients Know Best? Times columnist Denise Grady interviewed Dr. Basch about what led him to study patient reporting and why he thinks the discrepancy between patient testimony and clinician report exists. Here is an excerpt:

Intrigued, Dr. Basch began to study people receiving chemotherapy, and to compare symptom reports by patients with those from doctors and nurses. The differences were striking. For every problem — fatigue, nausea, appetite loss, vomiting, diarrhea, constipation — patients reported it earlier and more often than did doctors and nurses.

Why does this happen so often? There’s no simple answer.

“There is a sensibility among some old-school clinicians that they have a better sense of their patients’ experience than patients do themselves,” Dr. Basch said. “But doctors and nurses bring their own biases to the evaluation. They might say, ‘Mrs. Smith always exaggerates her fatigue — she says 9, but I rate it a 6.’ ”

Three clinicians asked to rate the same patient’s nausea will often give three different scores, he said.

The tendency to downgrade symptoms may be based on the doctor’s knowledge that a patient is in the early stages of an illness and could be much worse. Or the doctor may be making mental comparisons with other patients who are sicker: “You think your nausea is bad, you should have seen the patient I saw this morning, let me tell you,” as Dr. Basch put it.

Postblog: Changes to the way research or clinical trials are conducted so that patient testimony is included would be good news for everyone since everyone will one day be a patient. However, in order to be properly treated, patients will need individual doctors to be accurate listeners. For now, I recommend patients read their doctors’ notes to assure that they are an accurate reflection of what has been reported.

I would like to thank Z for sending me the New York Times link. Please check out her blog on the NYT article.

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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10 thoughts on “Would Relying on Patient Generated Data Make a Difference?

  • April 17, 2010 at 3:58 pm

    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.

    • April 19, 2010 at 8:21 am

      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.

  • June 26, 2011 at 2:51 pm

    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. 🙂

  • October 16, 2011 at 7:27 am

    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.

    • October 16, 2011 at 6:20 pm

      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.

  • February 2, 2012 at 10:07 pm

    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.

    • February 2, 2012 at 10:20 pm

      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.

  • January 28, 2014 at 3:55 am

    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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