Celebrate Rare Disease Day and Peer-to-Peer Healthcare

February 28th is Rare Disease Day , a day dedicated to raising awareness of the nearly 7,000 rare diseases affecting nearly 30 million Americans.  In other words, as many as one in ten Americans are suffering from a rare disease.

Globally, rare diseases affect more than 250 Million people. [Read more on FDA’s site for Rare Disease]  Find out how you can support Rare Disease awareness at NORD and EURORDIS

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, get treatment and to connect with others like themselves. As expected, the rarity of their conditions makes everything more difficult.

With the explosive growth of the internet and social media platforms, people with rare diseases are connecting at unprecedented rates.  Rare disease marketing is fast becoming the poster child for pharma’s version of long-tail marketing.

Today, Susannah Fox (@SusannahFox) of the Pew Internet & American Life Project issued a report “Peer-to-Peer Healthcare”  based on a national telephone survey of 3,001 people in September, 2010 and an online survey of 2,156 members of the National Organization of Rare Disorders (NORD) in December, 2010.   [You can also read Wendy White’s blog at Siren Interactive outlining her take on rare disease insights coming out of the Pew study.]

Some highlights:

  1. People are increasingly looking for others like themselves. One in four internet users living with chronic diseases (23%) say they’ve gone online to find others with similar health concerns.  By contrast, 15% of internet users who report no chronic conditions have sought such help online. And not surprisingly, those living with rare diseases who responded to the online survey far outpaced all other groups, including those living with chronic conditions, in tapping the wisdom of their peer network.
  2. Some of the most notable interactions involve people who meet online for the first time.  This was especially the case in the rare disease community
  3. When asked about the last time they had a health issue, 70% of adults in the U.S. say they received information, care, or support from a health professional.  Fifty-four percent of adults say they turned to friends and family.  Twenty percent of adults say they turned to others who have the same heath condition. I agree with Susannah Fox, “The oft-expressed fear that patients are using the web to self-diagnose and self-medicate without reference to medical professionals did not emerge in our telephone survey or special rare disease survey. Advice from peers is a supplement to what a doctor or nurse may have to say about a health situation that arises.”  
  4. Despite media and online hype, the majority of health care conversations happen offline; Just 5% of adults say they received online information, care, or support from a health professional, 13% say they had online contact with friends and family, and 5% say they interacted online with fellow patients.
  5. Patients are using professionals and peers for different kinds of information. When asked who is more helpful when you need a certain type of healthcare information, doctors and healthcare professionals scored highest for technical information, including medical diagnosis, information about prescription drugs and recommendations for other doctors or hospitals–where as fellow patients, friends and family scored highest for obtaining emotional support in dealing with a health issue and a quick remedy for an everyday health issue. Both groups were equally helpful in providing practical advice for coping with day-to-day health situations.

What can Pharma and patient marketers learn from the Rare Disease Community and their love of internet connectivity and peer-to-peer healthcare?

Perhaps it comes down to this…

“Alone we are rare. Together we are strong.”

2 thoughts on “Celebrate Rare Disease Day and Peer-to-Peer Healthcare

  1. Thanks, Ellen!

    I wasn’t sure what to expect when we fielded these two surveys – one of the general population and the other of rare-disease community members. So when I put the data together in January, it was a lovely surprise to see how these questions fit together – like the missing pieces of a puzzle I’d been working on for years. A satisfying “click” and the whole picture becomes visible.

    I’ll continue to analyze both data sets and publish more work based on the insights I find.

    • Susannah, I really like that you tried to merge two kind of studies into your insights…while I realize that the rare disease online survey isn’t projectable, I think it added another welcome POV to filling in the missing pieces!

      I’m looking forward to seeing additional learnings :-)
      Thanks, Ellen

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