Can a rare disease patient ever know too much?

In Uncategorized by Caroline Hornby

rare disease patients and orphan drugs Siren Interactive kindly provided this guest blog post from their blog, SirenSong. It was written by Eileen O’Brien, Director of Search & Innovation at Siren Interactive.

A recent 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?

For more information on orphan drugs and rare diseases, check out the World Orphan Drug Congress USA. Siren Interactive is a silver sponsor.