A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

For Rare Diseases – Knowledge Symmetry

Posted by | 12:33am on Thursday, January 22, 2009

Especially for patients with rare chronic diseases, the onus is on them to know as much as possible. 

Doctor 2-I recently blogged about the changing doctor-patient relationship and quoted Dr. Stanley Feld. His contention is that patients must become more active in their treatment, to the point of physicians as coaches and patients as players.

Does this mean that patients should suddenly be telling the physicians what to prescribe? Or that family doctors will no longer be trusted?

Knowledge Symmetry

Of course not, but the relationship is certainly changing. Another post on the e-Patients blog urged patients and doctors to “embrace knowledge symmetry.”

In this post, author e-Patient Dave expounds upon the “physicians as coach, patient as player” idea as he explains patients’ new responsibility to their own treatment. He writes that patients alone are in charge and that they have no choice but to assume an active role.

While I agree with Dave that this is the patient’s responsibility, this can also be viewed as an opportunity. Patients, who for years just worried and doing what their doctors told them to do, can now gain the knowledge and self-sufficiency necessary to take control of their own care.

For Patients With Rare Or Chronic Diseases

Especially for patients with rare chronic diseases, the onus is on them to know as much as possible. Except for the ultra specialists, most doctors don’t deal with rare chronic diseases every day. They can’t be expected to keep up with all the new information that comes out so frequently or to be able to devote the time to educate patients on everything they should be doing to stay as healthy as possible.

Patients with rare and chronic diseases are typically dealing with health issues over the long term. Hence, they are more likely to get and stay active in their treatment. And we’re seeing signs of this online already. The Pew Internet and American Life Project reports that, while patients with a rare or chronic disease may be less likely to venture online initially, they become more active health seekers once they do get online:

“Half (51%) of those living with a disability or chronic disease go online, compared to 74% of those who report no chronic conditions. Fully 86% of internet users living with disability or chronic illness have looked online for information about at least one of 17 health topics, compared with 79% of internet users with no chronic conditions.”

While patients in general are taking more responsibility to their care, it seems that patients with rare and chronic diseases are perhaps even more likely to be active participants. If this indication is correct, the role the online channel plays in marketing to these patients will become ever more important.

What do you think? If you are a patient with a rare or chronic disease, how has your online activity changed since diagnosis? What trends are healthcare professionals seeing?

(Image courtesy for Dwight Evans for Mayor via Flickr)

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

View other posts from Wendy

5 Pingbacks/Trackbacks

  • http://e-patients.net e-Patient Dave

    Hey, Wendy – great post. I couldn’t agree more.

    There’s a whole new thing evolving with this “knowledge symmetry” idea. Both doctors and patients often need to have their heads pried open to let this idea in – I sure know I did when I discovered the e-patient movement (and blog) a year ago this week (woohoo!) But when you get into it, it’s GREAT.

    But knowledge symmetry isn’t limited to rare diseases, is it? In the comments on my post that you linked to, another doc talked about the difficulties caused by his patients who won’t take responsibility for themselves and their conditions. And I don’t know (you’ve been at this longer than I have) but it seems to me as a patient that sharing responsibility comes hand in hand with sharing knowledge.

    I mean, I had (have) a relatively uncommon cancer. But even for things as common as Lipitor, it’s not unusual for an informed e-patient to be aware of things their doctors aren’t. There was this discussion about “our collective statistical illiteracy,” about a paper that documents how statistics are commonly misinterpreted not just by journalists and policy makers but even by MDs. And the paper specifically talks about misinterpretation of data about statins – and that includes MDs.

    So I don’t know what-all to think, especially when you consider the information overload doctors have to deal with. Chapter 2 of the e-patient manifesto quotes Donald Lindberg, director of the National Library of Medicine: “If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”

    As I studied that paper, I came to realize that the idea of knowledge symmetry isn’t at all an indictment of the medical profession or an assertion of incompetence on anyone’s part. It’s simply too big, and we can help.

    But it takes responsibility, too. Check out that short chapter.

    Anyway, good post.

  • http://www.sireninteractive.com Wendy

    Thanks so much for your comment Dave, and your suggestion on reading material. You make several good points. You are right about this not being limited to rare disease (I am always amazed when discussion happen around what I would consider common knowledge about diabetes) I guess I was thinking that this should be especially obvious for people with rare disorders. As you so rightly pointed out – sharing responsibility also means sharing knowledge. If we don’t help the physician they can’t help us!

    As an example:

    My daughter has a very rare disorder called Nail Patella Syndrome. I always start a doctor’s visit with a download of everything I know (or have heard from other doctors or HCPs) about this disorder and then we end up having a discussion about what the options are. It seems unreasonable to expect every (or ANY in my location) doctor to be an expert on this ultra-rare disorder but my going as far as I can seems to be MY responsibility and then the doctor with their much broader medical knowledge base can put it in perspective and sometimes come up with truly creative and insightful options.

  • Pingback: Why Marketers Should Support the Patient Journey Online | SIRENSONG()

  • Pingback: Influence the Debate | SIRENSONG()

  • Pingback: Power of a Simple Message | SIRENSONG()

  • Pingback: Participatory Medicine in a Rare Disorder | SIRENSONG()

  • Pingback: Integrate Traditional and Digital Media for Rare Disorders | SIRENSONG()

Siren Interactive
  • Siren Interactive
  • Rare Disease Relationship Marketing Experts
  • 626 West Jackson Blvd, Suite 100
  • Chicago, IL 60661
  • 312.204.6700
  • 866.502.6714 (Toll Free)
  • www.sireninteractive.com