October 26, 2009

Trends: The Social Life of Health Information

Susannah Fox shared the e-Patient Connections stage with Mark Bard of Manhattan Research to talk about the latest trends in consumer use of health information technology.

Here is the text of her remarks (slide prompts marked in bold): 

For 10 years the Pew Internet Project has been tracking the social impact of the internet. I focus on the impact of technology on health care.

We’ve seen the internet go from a slow, stationary, information vending machine to a fast, mobile, communications appliance. 

As a country, we’ve gone from about half of adults being online in 2000 to about 80% in 2009. People living with chronic disease lag behind the general population – only 53% go online – most likely because they are older than the general population.  That’s bound to change. Our data shows that people don’t give up their internet connections as they age.

Five percent of U.S. homes had broadband in 2000; two-thirds of homes have broadband in 2009.  Again, people living with chronic conditions are less likely to have home broadband service.

The new story is wireless.  56% of American adults go online wirelessly, whether it’s a laptop, PDA, or other device.  When we include mobile access in our definition of the internet population, differences between whites and African Americans disappear.

Tech adoption is only half the story. Americans have new tools, new capabilities, and new expectations about access to information.

Half of internet users watch videos online – and while quite a bit is for entertainment, there is some evidence that people are also watching videos related to serious issues too.

37% of internet users share photos online.  Many more view photos, or in this case, raw footage from a patient’s life, removing the mystery and teaching other patients and caregivers what to expect.

One in five internet users update their status on Twitter or another similar service like Yammer. So far there is a low incidence of health tweets. Most e-patients are not yet using Twitter as a health information tool – search is still primary. This is a challenging activity to capture in a survey question and we will continue evaluating how to track it in the coming months.

Nearly half of internet users use social network sites.  This is a question we were able to include in the 2008 Pew Internet/California HealthCare Foundation survey, in which we also asked people about their health status: One in four internet users living with a chronic condition are on a social network site.

Don’t count out people living with chronic conditions when you see these trends.  They are less likely than the general population to be online and less likely to use social network sites, but some are there and they will bring their friends along. The social media wave hasn’t crested yet. You still have time to catch it.

One in three internet users (including those living with chronic conditions) read blogs. I think the word “blog” is losing its meaning and will continue to be a challenge for us to track in surveys.

There is broad uptake for social media and user-generated content in health:

  • 59% of e-patients have consulted blog comments, hospital reviews, doctor reviews, and podcasts about health and health care.
  • 20% of e-patients have posted comments, reviews, photos, audio, video or tags related to health care.

Finally, our surveys find that the internet is increasingly helpful to American adults seeking health information.

  • 60% of e-patients (or 42% of all adults) say they or someone they know has been helped by following medical advice or health information found on the internet. That’s an increase from 2006 when 31% of e-patients (25% of all adults) said that.
  • 3% of e-patients say they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006.

Anyone who follows me on Twitter knows that I go on jags and will tweet for days about a new idea, new site, or new book I’m reading.  Right now it’s Connected, by Nicholas Christakis and James Fowler.

Using data from the Framingham Heart Study, they found that “obesity is catching.” But what’s really amazing is that they found is that it’s not your friends who make you fat, but your friends’ friends. Whole communities can spiral up or spiral down because of the actions of a few individuals.

As they write, “Social networks magnify whatever they are seeded with.”  What are YOU spreading?  What are YOU contributing to the connected world?  Are you spreading knowledge or are you spreading misinformation?

The U.S. political blogosphere is highly polarized.  What would a map of the health blogosphere look like?  Would industry be on one side and consumers on the other?  Where is the cross-pollination happening? Which companies, government agencies, and conferences are making the most connections between all the knowledge centers?

Here’s my argument for including consumers in your network:

Connected patients spread new ideas, new treatments, and new ways of approaching a condition. Patient networks can help you anticipate change and innovate in the right direction.

Patients and the people who love them are not just your target audience, but your colleagues. They are a resource for innovation and knowledge.

Instead of marketing to your audience, ask them to participate. Ask patients what they think.  Put them on the team so they can participate in whatever it is you are doing. They will collaborate with you to make it better. Patient networks are an early warning system for whatever you’re pursuing: a new service, a new device, a new drug, a new platform. 

Christakis and Fowler argue that humans have evolved to live and thrive within networks.

That’s the power of social networks. You can be among the first in the health care industry to really, truly take advantage of the social life of health information.