August 30, 2010

E-patients, Cyberchondriacs, and Why We Should Stop Calling Names

New concepts need gimmicks. Proven concepts do not.

The phenomenon of using the internet to gather and share health information is now mainstream. It’s time to change how we talk about it, revising and maybe even retiring certain terms. Carlos Rizo and I invite you (everyone!) to join our discussion on Wed. Sept. 1 at 12noon Eastern: E-patients, Cyberchondriacs, and Why We Should Stop Calling Names.

Some history to build our case:

In 1998, only about one-third of American adults had access to the internet. Harris Interactive published pioneering research about how internet users gather health information online, dubbing these 54 million people “cyberchondriacs.”

In 1999, Tom Ferguson, MD, came up with the term “e-patients” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He began work on a white paper, commissioned by the Robert Wood Johnson Foundation, to describe this new development.

In 2000, Lee Rainie and I wrote the Pew Internet Project’s first health report, The Online Health Care Revolution, using the phrase “health seeker” to describe someone who used the internet for health information.

Just to remind you of the sea change we’ve been through, in the year 2000:

  • 46% of American adults had access to the internet (now: 74%)
  • 5% of U.S. households had broadband connections (now: 66%)
  • 25% of American adults looked online for health information (now: 61%)

Over the last 10 years, using the internet to get health information has become an assumption, not an exception. The repetition of this finding from every sector — for-profit, non-profit, academic, government — has made it boring.

But I draw inspiration from Clay Shirky, who has said, “Tools don’t get socially interesting until they get technologically boring.”

Talking about people Googling for health info is boring. Talking about how health is becoming social online is interesting — even exciting. People are sharing and critiquing what they find. If they don’t find what they need, they are creating it.

In short, the data – Pew Internet’s and others’ — are quite clear that the online health revolution is over and that use of digital tools in tackling health problems is the natural state of affairs. Many of those who are involved in the effort to understand this shift believe that now is the time to build the new civilization.  Those who have studied the data and watched the struggle to call this phenomenon by an appropriate name think that means calling people who are part of this widespread phenomenon what they are: People.  They believe that the older labels like our “health seekers,” Harris Interactive’s “cyberchondriacs” and even Tom Ferguson’s “e-patients” now are less than helpful and accurate. They believe the right word is simply “people.”

Let’s talk about what this means — in the comments on e-patients.net or on Wednesday.

For more background on this discussion, please see:

Brian Reid’s post: It’s Time to Retire ‘Cyberchondriacs’

Jen McCabe’s post: The Redefining Patienthood Project Launches – Aims, Goals, and Many, Many Questions Ahead

Kevin Kruse’s post: What do you mean, “e-patient”?

Amy Tenderich’s post: “Patients” versus “Health Care Consumers”? Both, If You Ask Me

Dave deBronkart’s post: When the Patient is a Yahoo

My posts: Googlers vs. e-patients vs. cyberchondriacs and Cyberchondria: Old Wine in New Bottles

And from a different sector, also struggling with terms as they re-invent themselves:

Alex Howard: On Language: Putting Government 2.0 in Context