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Can a Patient Ever Know Too Much?

Posted by | 9:33am on Monday, July 25, 2011

It is our JOB to help our patients navigate their medical decisions with compassion, patience, and an open mind 

A recent QuantiaMD.com educational webinar for physicians was entitled, “The Patient Who Knows Too Much” as part of their “Difficult Patient” series. Indignation from patient advocates and a CNN story appears to have prompted a name change to “The Cyberchrondriac.”

You can register for free to view this presentation; however, you can’t see the comments unless you are a healthcare professional. To get a full understanding, I suggest viewing the presentation. It turns out that this case is about a patient with a mental illness who is expressing it via repeated doctor visits using information from the internet. Unfortunately, the physicians who present this case do not clearly express this and it comes across as a bit of an attack on empowered patients.

Leonard J. Haas, PhD, ABPP, starts off by saying: “Patients who present their expertise as telling you how to practice medicine are implicitly discounting your expertise.” I disagree. Often, patients are trying to understand what is going on with them or trying to find a diagnosis or new treatment.

Rare Disease Patients Drive Diagnosis
One of Siren’s key insights, through years of working in rare disease therapies, is that rare disease patients are the primary drivers of diagnosis and treatment. With the huge volume of information, there is no way physicians can stay current, especially on diseases which they may never see in their practice. As Dr. Donald Lindberg, director of the National Library of Medicine, said, “If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.” These patients and caregivers are uniquely motivated to research and try to find out what’s wrong.

While by their very nature rare diseases are rare, taken as a whole they impact 1 in 10 Americans. I’ve heard story after story of patients and caregivers who played a critical role in their diagnosis. Here’s an example: Julia Smit was only diagnosed after her grandmother, who worked at a lab, had Julia’s blood tested. Siren’s collection of stories about rare disease caregivers, Uncommon Challenges; Shared Journeys, offers more examples.

“It is our JOB”
Dr. Haas says: “Correcting patients misconceptions can really take quite a bit of time.” In her blog on this topic Lissa Rankin, MD, responds: “But this is our JOB. We are teachers, healers, educators. It is our JOB to help our patients navigate their medical decisions with compassion, patience, and an open mind.”

It’s important to also note that Dr. Haas does say: “Quite possibly you’ll learn something [from the patient].”

Joseph Scherger, MD, MPH, provides good advice about giving the patients reading assignments from trusted sources. I also like his suggestion to “Use secure online communication to process information rather than time consuming visits. Get that sent ahead of time online which lets you actually check some sources yourself…” Unfortunately, Dr. Scherger also generalizes about these patients: “They are out of shape, they are on the internet all the time.”

Information is Power
I think my biggest issue was with the original title, since I don’t think a patient can ever know too much about their health or medical care. Changing the title from “The Patient Who Knows Too Much” to “The Cyberchondriac” definitely was an improvement and reframes the webinar.

If information is power, then the internet has enabled a huge power shift in health care. It wasn’t too long ago that if you wanted information about your health, you had to go to a doctor. Physicians had all the information and all the power. With the rise of the internet, the average person gained easy access to health information, including medical journals. It’s important to note that we don’t have the medical expertise or scientific training to interpret the information, but we do have access, which provides the opportunity to learn and ask questions. It appears that some physicians are still struggling with how to handle this shift.

I applaud the rise of the educated, empowered patient engaged in their care in partnership with a healthcare provider. This whole story reminds me of my mother, an RN, who several years ago was asked to leave her internist’s practice after only a year. The reason given was that she had too many questions and was seen as difficult. My mother was happy to leave and has found another doctor who welcomes her involvement.

What do you think? Can a patient ever know too much?

(Image courtesy of Joel Penner on Flickr).

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

View other posts from Eileen

32 Pingbacks/Trackbacks

  • http://twitter.com/ddwebster Dana Webster

    As a patient with a relatively rare cancer, I side with those who agree that information is vital in making good health decisions.
    However, I can make arguments on both sides. Having been in the world of injectible diabetes medications for 8+ years, patients need to take it upon themselves to be empowered and educated. Too many are apathetic and complacent with one medical opinion.
    As a second-time cancer patient, we’ve traveled to some of the top institutions to get opinions to work with my primary oncologist to develop a treatment plan. I’ve spent countless hours on Google Scholar, NIH’s website, ClinicalTrials.gov to learn about what is available so I can make the best treatment decision for myself to finally rid my body of Hodgkins. It might not happen, but I want to be part of the process. There is no recipe for making sure it’s gone, so we have to go with educated guesses on how best to do it for me.
    What the public needs to do is to understand that medicine is still as much an art as it is a science. Credible sources come in various packages. Just because someone wears the white coat doesn’t mean they’re right. But, allowing yourself to believe everything just because it’s written on the internet is as much a travesty.
    Another excellent blog post!

    • http://twitter.com/eileenobrien Eileen O’Brien


      Thanks for your openness in sharing your personal journey with us. As I noted, my mother is an RN and she instilled in me a healthy(!) attitude towards physicians similar to your comment that “just because someone wears the white coat doesn’t mean they’re right.” And, of course, all information on the internet has to be reviewed keeping in mind the source and potential bias.

      Thanks again for sharing.

  • http://twitter.com/richmeyer Rich Meyer

    In an era of patient empowerment the question might be “does a patient deserve to know everything ?”. There are of course downsides to knowing too much information but from what I have read most patients still rely on the doctor for the bottom line on information and treatment options. What I am fearful of is that many people are making healthcare treatment options based on what they read on the Internet as we know that less people are going to see their doctors.

    Physicians cannot take for granted that what they say is going to happen or be the best choice for the patient because patients want to know about their options. Physicians have to learn that people are not patients; they are a person who wants to know as much as possible before making a decision that could effect their lives

    • http://twitter.com/eileenobrien Eileen O’Brien

      Thanks for taking the time to comment Rich. Your note about people relying only on the internet for information brought to mind the excellent presentation Dr. Val Jones gave at ePatient Connections, A Tale of Two ePatients: http://bit.ly/ou08tq. Relying on one source for information (whatever source that may be) can definitely be problematic.

  • http://twitter.com/rohal rob halkes

    Thx Eileen for a great post.
    Yes, I agree with you on the issue about patients’ information: it is a difficult one for doctors and other medical professionals. Specifically so, when they work in a (managerial/organisational) context that expects them not to give the patient too much of their time. That is, when the business model of the care just dictates a specific (mostly too short) amount of minutes to spend. (This time space is often only conditioned by counting how much time the necessary medical action would take.) In this context, information to the patient, explaining, or giving reassurance, answering questions or even discussing patient views on its condition etc., will possibly be not calculated. So patients information or informing patients is a burden then, and is not perceived as a medical act.
    In this way information from or for a patient is perceived as a nuisance. Some medical professionals, I recently had a discussion just the other day with one of them, have difficulty with defining the very perception of a patient as a fact of personal experience, and thus a reality of its own. Just as teachers do when acknowledging the starting condition of a pupil’s knowledge before being educated. It often takes me minutes to explain medical professionals that a current patient’s knowledge, how naive or ignorant or simple as it might seem, is still a fact, and cannot be seen as wrong. The right attitude would be the educational one: to inform and have the patient learn. But then again, medical professionals are just not educated to teach and coach?
    In this perspective patients, nor students, and indeed persons in general cannot know to much or too little.
    Thanks for reading

    • http://twitter.com/eileenobrien Eileen O’Brien


      Thanks for providing your perspective. Thanks also for the reminder that the limited amount of time physicians — and NPs, PAs and other allied health practitioners — can spend with patients makes things difficult for both sides.

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  • http://twitter.com/marymodahl marymodahl

    Eileen – thanks for taking up this important issue – doctors and patients are both finding new, and hopefully more effective ways to communicate and learn using technology. It’s not always easy on either side, but the discussion you are leading is an important step to build understanding.

    • http://twitter.com/eileenobrien Eileen O’Brien


      Thanks for your comment and appreciation of the dialogue. I’m sure it’s a topic that we’ll be continuing to talk about in upcoming years. I hope you feel I presented QuantiaMD and the situation fairly. Again, I’m glad that the title of the piece was changed to reframe it more appropriately.

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