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

Pharma’s Role in Participatory Medicine

Posted by | 3:57am on Saturday, February 28, 2009

There is a raging debate going on right now on the fabulous blog e-patients.net about participatory medicine.  This blog was launched by E-patients: How They Can Help Us Heal Healthcare, a white paper supported by Robert Wood Johnson, which laid out a simple theme:

e-Patients are driving a healthcare revolution of major proportions.

The old Industrial Age paradigm, in which health professionals were viewed as the exclusive source of medical knowledge and wisdom is gradually giving way to a new Information Age worldview in which patients, family caregivers, and the systems and networks they create are increasingly seem as important healthcare resources.

Put in practical terms—with shared information, trust and participation in shared communities (ideally with shared data), we can all benefit from better healthcare outcomes.  Nowhere is this truer than for rare disorders.

To further underscore this point, physicians can’t keep up with all the new information coming out.  Donald Lindberg, director of the National Library of Medicine, explains:

“If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.” (white paper, chapter 2)

On the other hand, patients and their caregivers have a deep and compelling personal reason to find all the information and support they can.  And they are largely doing this on the internet through patient communities.  Sometimes, in sponsored groups like PatientsLikeMe (ALS/Lou Gehrig’s disease), they are uploading their data (anonymously), sharing it, looking for patterns, and even creating their own clinical trials.

They are  also sharing through more confidential listserves like ACOR.org (Association of Cancer Online Resources).  E-patient Dave credits the information found on a therapy there with saving his life.  Additionally, information is shared through personal blogs and online journals like caringbridge.com and occasionally through foundation sites.  The only thing these have in common is that they are all on the internet and all accessed by patients though search.  According to a Manhattan Research survey, about 10 million consumers regularly post health data and gain information online.

But is the information accurate?

One concern about patient communities is that the information may not be correct or current.  According to Health 2.0 for Neurologists, neurologist Dan Hoch, MD, PhD, and his colleagues explored this question with the epilepsy community of their BrainTalk forums and found that a panel of three neurologists and a neurology nurse judged that 6% of the posted information contained factual inaccuracies.”

But, it also stated that “In Health 2.0 communities, when incorrect information does appear, it is often corrected quickly, even if all participants are patients.”

As Matthew Holt, blogger at The Health Care Blog stresses, the existence of such communities is particularly important for unusual symptoms and rare diseases.

In principle, all these formats of community discussions are similar to longstanding institutions such as meetings of professional societies and letters to medical journals, but the ability to exchange information instantly and find it by searching the web is a big enough jump in capabilities as to merit the “Health 2.0″ designation.

What can Pharma do?

For rare disorders, in addition to the patient and HCP communities the pharma companies also have a role to play.  Like patients, they have a deep and compelling reason to supply all the information and support they can.  And they have the resources.  They have the information patients are craving and they have oversite from the FDA.  While I would love to see the day that Pharma companies share more of their clinical trial information, now they have the opportunity and obligation to participate by reading the patient community discussions, by giving grants not only to the foundations in their therapy area but also to organizations like NORD that have the ability and position to congregate rare disease data directly and not through a third party — to look for similarities and push for adequate insurance oversight.

What do you think the appropriate role of Pharma is in this new model?

To stay connected with this conversation and receive alerts on new postings, please subscribe via RSS, or sign up for our monthly newsletter, Adventures in eMarketing, to receive a roundup of the toprated blog posts, associated reading lists and relevant insights.

(Image courtesy of Cloodlebing and Great Kindness 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

4 Pingbacks/Trackbacks

  • http://www.participatorymedicine.com Gilles Frydman


    Thank you for this wonderful summary of our discussion!

    Just this afternoon, I received a call from one of the ACOR communities manager. He, alone, built a community for people suffering from an incredibly rare condition, called POEMS. That community has 60 members. Incredibly tiny but absolutely life-saving. The founder of the group knows more about the disease than almost any doctor in America. He considers that there is a single clinical specialist for this condition! Now, multiply this by thousands of rare conditions and you end-up with a very large number of Americans whose lives have been saved by information they found in necessarily confidential online communities. The long tail of medicine has been leading the internet way for close to 15 years, while no one was paying attention.

    And sometimes the pharmaceutical companies can tremendously benefit from these small groups of patients. Who hasn’t heard of Gleevec today. But back in 1999, when we started the STI571-GIST confidential listserv on ACOR, no one had (the name had not yet been introduced, it was still only the Signal Transduction Inhinbitor #571). The vast majority of oncologists had NEVER heard of GIST and even less had heard of the new test to see if patients were c-Kit positive or not. In short, the life expectancy of thousands was drastically changed because a patient group insisted that newly diagnosed patients had to educate their physicians about new science and new treatment. Novartis recruited patients for their clinical trials at record speed and got Gleevec approved much faster than originally anticipated. A great benefit for all.

    We need more partnerships of this kind with pharmaceutical companies as we launch in this new era of Participatory Medicine. If you are ready to enter this new paradigm we surely want to talk to you!

    Gilles Frydman

  • Pingback: Gilles Frydman()

  • Pingback: Bruce Shriver()

  • http://sirensong.sireninteractive.com Wendy White


    Thank you so much for all you are doing to help spread the word and build communities online. I have a good friend whose life was saved by Gleevec. What an amazing drug, and what an important role your group played in this story. I also know the woman who shepherded that drug through Novartis, her name is Meryl Zausner and when she won the 2007 Healthcare Business Woman’s Association’s Woman of the Year, it was her experience with Gleevec and the whole community (right after losing her own husband to cancer) that she was most moved by. Everyone has a role to play.

  • Pingback: We are Living in Exponential Times | SIRENSONG()

  • Pingback: Participatory Medicine in a Rare Disorder | 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