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Is the Speed of Adoption of Participatory Medicine Greatest for Rare Disorders?

Posted by | 5:12pm on Tuesday, April 28, 2009

Consumers with chronic conditions want self-care resources and health coaching to manage their condition. 

Participatory medicine is a term to describe a new type of engagement between patients and healthcare providers.  The way health care is delivered is changing. This is due to:

  1. The availability of new technologies to communicate,
  2. The need for more information by patients (especially those with a rare disorder), and
  3. Pressures on the healthcare system like the rising cost of medicine.

And nowhere is this happening faster than in rare disease categories.

The vast majority of people still rely almost solely on their doctor’s advice.  In a Deloitte Study published this spring, 4,000 adults were asked about their online behavior around health care.  Deloitte grouped respondents into six categories based on their satisfaction, use of health services and behaviors around health care.  The study found that categories that represented more passive, less engaged patients declined in size and categories that pointed to more engaged patients grew in the past year.

Patients with Chronic Conditions Are the Most Engaged Online

Two of the six categories were the content and compliant (29.3%) and the sick and savvy (24.3%).  Needless to say, the sick and savvy had the highest reported system use. In terms of information they have the strongest sense of quality differences, are likely to seek coverage details, trust websites, and have personal health records.  They are also likely to ask for a drug by name and less likely to switch providers or plans. AND… Consumers with chronic conditions want self-care resources and health coaching to manage their condition.

What would be really interesting to know is how the sick and savvy group were broken down by type of condition and if there were actual data to support the idea that people with rare chronic conditions use the internet more than people with more common chronic conditions (because they have to take control of their own healthcare and can’t get the information anywhere else).

Cancer Patients / Rare Disorder Patients

Today, many types of cancer actually fall into the rare disorder category.  As we learn more and more about these diseases and the available treatments, communities are getting more and more segmented.  And their connectivity and community activity online reflect a growing group of active participants. According to Manhattan Research’s Cybercitizen Heath study, more than 60% of cancer patients are eHealth Consumers who go online for health information. They also report that this condition group tends to be more comfortable with sharing information and resources than other types of patients – and that eHealth cancer patients are twice as likely as the average eHealth consumer to post health content online.

Why is this?  Cancer is an emotional disease to navigate, much like (if not already) other rare disorders.  This leads patients to turn to anyone who can help them navigate through their life-affecting decisions.  Cancer patients’ willingness to share treatment experiences and advice is helping the online community to flourish – social media plays an important role in cancer care and by extension should also play the same kind of role for rare disorders.

The Political Experiences of the Obama Campaign Accelerate Adoption of Social Media and Participatory Medicine

We in pharma marketing should also pay attention to the way Obama used social networking to create and view user-generated content.  The success of that campaign not only helped who got into the White House, but it also may have accelerated the adoption of participatory medicine.  There is now a class of people online who believe they can make a difference by using social media to advance their agendas.  Susannah Fox recently blogged:

More than half of the entire adult population in the U.S. used the internet to get involved in the 2008 political process. Blogs, social networking sites, video clips, and plain old email were all used to gather and share political information by what Lee Rainie has dubbed a new “participatory class”:

  • 18% of internet users posted comments about the campaign on a blog or social networking site.
  • 45% of internet users went online to watch a video related to the campaign.
  • Half of online political news consumers took advantage of the “long tail” of election coverage, visiting five or more types of online news sites.

And guess what? This participatory class of citizen is not ready to go back in the box. Many people expect to stay engaged with the Obama administration and you can bet that the rise of mobile applications will accelerate this trend toward engagement for lots of Americans.

So, does all this mean that the adoption of participatory medicine is happening fastest for people with rare disorders?  Is this just the tip of the iceberg for where healthcare is going?  I would love to hear your thoughts.

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(Image courtesy of jpctalbot 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.

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