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)
- 28 February 2009 at 1:02am
- Gilles Frydman 28 February 2009 at 10:02am
- Bruce Shriver 09 March 2009 at 3:03pm
- We are Living in Exponential Times | SIRENSONG 08 April 2009 at 11:04am
- Participatory Medicine in a Rare Disorder | SIRENSONG
Here is somebody who got it! #PMED ...
Pharma’s Role in Participatory ...
[...] (and where healthcare and technology meet) and particularly for information around rare diseases. There is too much information coming out too ...
[...] As pharma marketers, we have the opportunity and obligation to provide patients, their family members, healthcare providers, as well as ...