Participatory medicine is taking hold with both citizens and health professionals.

But there are still pockets of people who lack access to the basic technology, lack the skills required to participate, lack interest in trying something new, or who may lack the sense that they are welcome.

The Pew Internet Project studies the social impact of the internet.  We conduct classic telephone surveys to measure tech adoption in the U.S. and to map online social life. Our most recent survey about health and health care was conducted in December 2008 in partnership with the California HealthCare Foundation and I am writing a report which will come out in a few weeks.  I am here to give you a sneak preview of those findings.

We all know that broadband enabled “always on” access. Now, mobile has created the state of being “always connected.” The consequence is that mobile is changing us, once again, as internet users.

39% of adults are what we call Motivated by Mobility. That describes most of the people in this room. You just checked your email and you are probably Twittering. We use wireless technology not as a replacement, but as a supplement to everything we do on our desktops.  Mobile access creates a “continual information exchange” that feeds on itself and reinforces our collaborative behavior. 

Tap into that mobile hive and you’ve got a chance to make a difference in this world.

Most Americans – 61% of adults – are what we call the Stationary Media Majority. Many are on the “have” side of the so-called digital divide. They have broadband, they have a cell phone – but they are rooted in old media. 

If you’re someone who thinks that online collaboration is a good thing, you have not convinced these people. In fact, you may even be losing them. They are just not that into your hive. They are satisfied with old ways or just comfortable with a desktop experience.

Looking specifically at health, the Pew Internet Project confirms our finding that 8 in 10 internet users, or 61% of U.S. adults, have looked online for health information.

But more importantly, just as we find that mobile access creates a “continual information exchange” the Pew Internet Project finds that online health research does not replace traditional sources of health information.  Participatory medicine can reinforce and supplement traditional sources of care.

The vast majority of people with a health question want to consult a health professional.  The second most popular choice is friends and family. Third choice: the internet and books.

But participatory patients or e-patients are using the internet in new ways. Some are going online to connect, in fact, with what we think of as traditional sources: health professionals, friends, and families.

Technology is not an end, but a means to accelerate the pace of discovery, widen social networks, and sharpen the questions someone might ask when they do get to talk to a health professional. Technology can enable the human connection in health care. 

For example, a significant percentage of internet users look for tailored information, provided by other e-patients, seeking the “just-in-time someone like me” who can help them in a given situation:

  • 41% of e-patients have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
  • One-quarter of e-patients have consulted rankings or reviews online of doctors or other providers
  • One-quarter of e-patients have consulted rankings or reviews online of hospitals or other medical facilities

I hope that the Pew Internet Project’s upcoming report can add new insights to the excellent work done in the past year by other researchers.

The Deloitte Center for Health Solutions found that “the majority of consumers want to share decision-making with their doctor; only 20% are content to let their doctor control those decisions.”

Edelman’s Health Engagement Barometer is tracking the rise of “Health Info-entials” and points out that the New Second Opinion means that “no single source of information stands out or stands alone.” It’s a network. It’s a hive.

The Center for Studying Health System Change also measures “patient activation” and finds that 41% of patients have the knowledge, skills, and confidence to manage their health.

But we have a potentially severe problem. Your “just-in-time someone like me” may not be online or they may not be speaking up in public forums:

  • Only 5% of internet users have posted comments, queries, or information about health or medical matters in an online discussion forum
  • 5% of e-patients have posted a review online of a doctor (recall that one in four have consulted such reviews)
  • 4% of e-patients have posted a review online of a hospital.

We do not have full participation.

However, few people foresaw what happened when the Obama campaign first began using social technologies to motivate citizens to donate, to volunteer, and to vote. Keep your eye on mobile adoption since “always connected” citizens are likely to be at the forefront, navigating the new health care delivery system.

Mobile could be a game-changer. But only for those who get in the game.