One of our core findings (8 in 10 internet users, or about two-thirds of U.S. adults, look online for health information) is based on a series of questions that is tweaked in each survey.  We re-word or separate concepts, cut some topics, and add others. Are there topics missing from the list? Which ones deserve to be repeated this year? No promises, but I asked for similar feedback in 2008 and implemented a few of the suggestions (see the “2008 only” topics below).

a.         Information about a specific disease or medical problem (asked in 2002, 2004, 2006, 2008: results)

b.         Information about a certain medical treatment or procedure (02, 04, 06, 08: results)

c.         Information about experimental treatments or medicines (02, 04, 06, 08: results)

d.         Information about alternative treatments or medicines (02, 04, 06, 08: results)

e.         Information about diet, nutrition, vitamins, or nutritional supplements (02, 04, 06: results)

f.          Information about exercise or fitness (02, 04, 06, 08: results)

g.         Information about prescription or over the counter drugs (02, 04, 06, 08: results)

h.         Information about immunizations or vaccinations (02, 04, 06: results)

i.          Information about how to quit smoking (02, 04, 06: results)

j.          Information about problems with drugs or alcohol (02, 04, 06: results)

k.         Information about depression, anxiety, stress or mental health issues (02, 04, 06, 08: results)

l.          Information about environmental health hazards (02, 04, 06: results)

m.        Information about sexual health (02, 04, 06: results)

n.         Information about a particular doctor or hospital (02, 04, 06: results)

o.         Information related to health insurance (02, 04, 06: results)

p.         Information about Medicare or Medicaid (02, 04, 06: results)

q.         Information about dental health (2006 only: results)

r.       Information about doctors or other health professionals (2008 only: results)

s.       Information about hospitals or other medical facilities (2008 only: results)

t.        Information related to health insurance, including private insurance, Medicare or Medicaid (2008 only: results)

u.       Information about how to lose weight or how to control your weight (2008 only: results)

v.        Information about how to stay healthy on a trip overseas [IF NECESSARY: such as immunizations and shots] (2008 only: results)

And here’s the catch-all to scoop up any topics we missed:

w.      Information about any other health issue (2008 only: results)

Carlos Rizo, Chief Imagineer of the Health Strategy Innovation Cell, posted this very intriguing tweet on May 2:

The power of open data: To find problems in complicated environments, and possibly even to prevent them from emerging.

Clicking through, I saw it was a quote from this eye-popping post: Case Study: How Open data saved Canada $3.2 Billion. The writer, David Eaves, concludes (emphasis added):

When data is made readily available in machine readable formats, more eyes can look at it. This means that someone on the ground, in the community (like, say, Toronto) who knows the sector, is more likely to spot something a public servant in another city might not see because they don’t have the right context or bandwidth.

Where have we heard that before? How about every e-patient story, um, ever? Or, as Regina Holliday recently testified, “I may not be an expert at my husband’s disease, but I am an expert when it comes to my husband.” That’s the power of one person, to care so much about someone that they will read his entire medical record.

If someone is motivated enough to dig, interested enough to analyze, and knowledgeable enough about their chosen topic to see data with fresh eyes, they can start a revolution on a small scale (like preventing medical error for a loved one) or on a large scale (like exposing widespread corruption).

The Pew Internet Project recently released an in-depth look at Government Online in which we found that 40% of U.S. internet users (age 18+) have gone online for raw data about government spending and activities. (Note that we released the data set, too.)

Some say this is just the beginning, which is why we conducted the survey, hoping to pick the topic while it’s ripening. Others say there’s a limit to the number of people who will ever want to crunch data. See, for example, Adam Bosworth’s recent speech, in which he says most Americans don’t want data per se, but want to know how it fits in to their lives.

Now comes the Design for America contest, being run in conjunction with the Gov 2.0 Expo and in celebration of the U.S. Open Government Initiative. (Full disclosure: I am on the Expo’s program committee and hope that it will be, like last year, a one-stop shop for cross-disciplinary inspiration.)

On the front burner for all those reading this blog, of course, is the Community Health Data Initiative from HHS.

Now, HHS did not receive a perfect score from a citizen group evaluating its open government plan, but it is attracting talent, namely  Ted Eytan and Regina Holliday. Check out their plan for unlocking hospital data together and think about how you can throw some logs on the data fire.

Also, think about attending – or at least following updates from – some of the public service/data geek conferences coming up this spring:  Gov 2.0 Expo (May 25-27); Personal Democracy Forum (June 3-4); Health 2.0 Goes To Washington (June 7). These are just the three that I know about: What other meetings fit this description? Where else is the data revolution taking place?

Health 2.0 Europe began, for me, in February, when I started thinking about some of the topics that the Patients and Online Communities panel would discuss. My post, “Privacy can kill, openness can heal,” kicked off a discussion about health data rights, the role of health professionals, security/confidentiality/privacy, patient-driven research, and why relatively few patients have joined formal patient communities while naturally-occurring communities on Twitter/MySpace/Facebook have blossomed.

The feast of ideas continued as I talked with Indu Subaiya, the moderator, and Gilles Frydman, Jamie Heywood, and Alexander Schachinger, three of my six co-panelists. I did as much research as I could on the other three panelists, but was a bit hampered by my inability to read German or Italian! I needn’t have worried — their presentations were fantastic (and in beautiful English).

I decided to use my opening remarks to dispel a couple of myths (the internet does not replace doctors, for example) and to hopefully spark a conversation (even if it was only in the audience members’ heads) about how it is time for Health 2.0 to evolve. Why?

Because nobody in that room needed to hear about the basics of patient networks.

Instead, it is time to talk about the power of health conversations informed by data, the self-experimentation that people engage in using information often found online, the impact of real-world experience on drug safety, and of course, participatory medicine.

Here’s what I said:

For those of you who don’t know me, I work for the Pew Research Center’s Internet & American Life Project, which studies the social impact of the internet. The best way to explain it is to say I am an internet geologist.  I measure patterns in the internet landscape. Here’s a very important distinction:  A geologist does not judge the rocks. She studies them. I don’t say one technology is better than the other. I don’t say one outcome is better than the other. I provide data to help you make those judgments.

All of my reports and data sets are available for free on the Pew Internet Project’s website and you can argue (or agree) with me about our findings on Twitter or on e-patients.net.

Today I’m going to give you just a few data points to think about as we discuss patient networks and participation in health care.

Pew Internet surveys show that about 8 in 10 American adults have access to the internet, but access varies according to someone’s age, education, income level, and health status.

Only about two-thirds of people living with chronic conditions go online, including people living with diabetes, heart conditions, high blood pressure, lung conditions, or cancer.

E-patients are listening to each other, consulting hospital reviews and doctor reviews, and posting which treatments work for them. Internet users living with chronic disease are more likely than others to look online for information about prescription or over the counter drugs – about half do so.

However, the internet does not replace doctors, nurses, and other health professionals.  93% of people living with chronic disease turn to a health professional for medical advice. The internet is a supplement. The internet is changing people’s relationship to information, which affects their relationship with health professionals, but we need to move past this notion that doctors should fear the internet’s influence any more than we need to fear the telephone.  This is evolution.

Part of the evolution is recognizing that 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. Our data shows they are ready.

I think Health 2.0 is at a critical moment in its evolution.  Ask yourself how you are evolving. Are you adapting to the shift to mobile? Are you adapting to the rise of participatory medicine?  What is your goal and which technologies, policies, and practices best fit that goal?  As we crawl out of the primordial soup of the first decade of Health 2.0, think about whether you want to be a creature that walks on land, flies in the air, or swims in the sea.

I would argue that we have two archetypes on stage:  ACOR is a community of cancer patients who communicate via email: in text, in narrative.  PatientsLikeMe is a community of people with life-changing diagnoses who also communicate in text, in forums, but also share and compare data.  Cancer may lend itself better to the ACOR approach, whereas ALS may lend itself better to the PatientsLikeMe approach. Both are founded on a principle of openness. But before we go farther, let’s make sure we  are aware that by choosing narrative, by choosing data, by choosing open sharing or by choosing closed systems, we are evolving in certain directions.

Pew Internet data shows that the deck is stacked against people living with chronic disease.  They are likely to be older, less educated, living in lower-income households. But if they can get online, they have a trump card, a secret weapon: each other.  If they can get access to the internet, they adapt to the opportunity.  Chronic disease actually makes it more likely that someone will participate in the online conversation, to consume user-generated content, to seek and share peer advice. If they can adapt, why can’t you?

—

What followed was, in my opinion, a stellar discussion and series of presentations (and you know I’m honest about failed panels). I can’t wait for the video to be posted (as long as they leave off any frighteningly close shots of my face – yikes those cameramen liked the zoom) but in the meantime the feast continues:

On Twitter:

Archive of Health 2.0 Europe tweets (PDF)

Follow related conversations: #health2eu #hcsm #hcsmeu #WhyPM

On blogs:

Matthew Holt: Health 2.0 Europe–My Take (tying lots of threads together)

Denise Silber: Health 2.0 Europe (quite a few posts)

David Doherty: Health 2.0 Europe Review (unvarnished, even stinging, so his praise is especially appreciated)

Colleen Young: Health 2.0: Why SharingStrength will be in Paris this spring (wins my award for Most Valuable Tweeter and she seemed to soak up more knowledge than anyone else I met at the event)

Please join me at the table. What’s next for patient networks? What are you building today that is different from what was available 5 or 10 years ago?  What should be preserved as we go forward?

The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in your work to harness that passion?

Pew Internet Project data is often used to benchmark where we are with tech adoption in the U.S.  Here is where we stand:

79% of adult Americans have access to the internet.

63% of adults have broadband internet connections at home.

56% of adults access the internet wirelessly on some device, such as a laptop, cell phone, MP3 player, or game console. When we include mobile access in our definition of the internet user population, the differences between African American adults and white adults disappear.

But where do we stand in terms of participation?

60% of e-patients (internet users who go online for health information) have engaged in some sort of social media related to health and health care, mostly consuming information created by other people, not posting their own thoughts.

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 25% of all adults said that.

We ask the opposite question, but find it is a flat-liner: 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.

However, while mobile adoption is creating greater access and participation among African American adults, for example, there are other groups who remain disproportionately offline, such as people living with chronic disease or disability. They may be missing out on opportunities, but just as importantly, we are missing their voices in the conversation.

As the Society for Participatory Medicine moves forward, these twin issues of access and participation should be central to the conversation.

Again, what are you doing in your work to harness the passion of patients and caregivers? How are you going to help bridge the access gap, but even more importantly, the participation gap?

Here’s what I’d say: E-patients want access to tools and information.  Many will find what they need, many will not. You can help.

Some background:

The Office of the National Coordinator for Health Information Technology is holding a hearing on Friday, September 18, to review privacy and security issues before the Health IT Policy committee.

Check out the line-up for my panel, “Patient Choice, Control, and Segmentation of Health Information”:

• Deborah Peel, Patient Privacy Rights
• John Rother, American Association of Retired Persons
• Marc Overhage, Regenstrief Institute
• me

Each person will have five minutes to get some essential points across and then engage in a discussion, so if you are really a health data geek, listen in starting at 8:30am Eastern.

Other panels will cover data stewardship, de-identification/re-identification, and transparency/accountability. I’m no expert on HIPAA or code, but yes, I will suggest that Paul Ohm’s article, “Broken Promises of Privacy,” be considered required reading for all the reasons I wrote about here.

My statement:

In the year 2000, the Pew Internet Project began surveying the American people about the social impact of the internet. Health care quickly emerged as a key area of study, driven by the fact that 6 in 10 American adults go online for health information and many report that they make health care decisions based on what they find. For shorthand, I call this group “e-patients.”

The Pew Internet Project’s most recent research shows that American adults have different expectations about access to information now than even just two years ago, partly due to the availability of new tools, partly due to mobile internet adoption, and partly due to a new zeitgeist.

In the early days of the internet, e-patients routed around doctors who told them not to go online by either changing doctors or going underground with their research. E-patients are moving out ahead once again, not waiting for policymakers to figure out the HIPAA implications of social media, but just getting out there and taking advantage of the tools available.

For example:

• 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.

However, Americans’ longstanding practices of consulting a health professional, a trusted friend, or a wise family member persist. When asked which sources they turn to for assistance, the internet comes in third (tied with books) behind asking a health professional and talking with friends or family members. There is no evidence that the internet is replacing health professionals, or Dr. Mom, but rather it is enabling a new way to connect to information and resources.

Broadband and wireless internet connections are driving the adoption of social media, allowing Americans to become used to being able to not only access, but share information anytime, anywhere. Fully 56% of American adults have accessed the internet via a wireless connection and when we include mobile devices in our definition of the internet user population, historical differences between white and African American adults are erased.  Mobile could be a game-changer for health and health care, so please be sure to include a discussion of wireless access in your deliberations.

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.

Millions of people are taking part in the online health revolution we first documented in 2000. Instead of restricting access to information that can aid health decisions, I urge you to consider the lessons from our data. E-patients want access to tools and information.  Many will find what they need, many will not. You can help.

(Please leave a comment if you have anything else you’d like me to share with the Health IT Policy committee.)

That’s my summary of presentations from last week’s National Conference on Health Communication, Marketing and Media conference, where I had the sense, once again, of a tribal meeting, but this one had the urgency of war council. The enemy is legion: flu virus and Salmonella, yes, but also misinformation and misunderstanding.

I was on the edge of my seat for most of the conference (OK, yeah, I am a health geek):

• The FDA and CDC teamed up to create YouTube channels, a searchable database of recalled products, and other social media campaigns during the Salmonella Typhimurium outbreak in January.
• The Mexican government’s efforts to contain the “swine flu” were hampered by the fact that all their plans had assumed the pandemic would start in Asia (but the president’s on-air demo of how to cover a sneeze apparently helped focus the nation).
• AIDS.gov and CDC are deploying contests, blogs, and social network profiles to empower people to become health advocates.

Unfortunately, the full program is only available as a PDF, making it hard for you to confirm this, but believe me, it was an extraordinary event (check the #NCHCMM09 Tweets for proof).

Janice Nall of the National Center for Health Marketing at the CDC moderated a panel on social media’s promise for public health which included me, Jeff Lee of Distributive Networks, and Bob McKinnon of YELLOWBRICKROAD Communications.

Nall kicked things off by talking about Social Media at CDC, which lists all their initiatives, from Twitter and Flickr to MySpace and Second Life. Between April-August 2009, their H1N1 flu-related videos have been viewed over 2 million times, they amassed over 700,000 Twitter followers, and 17.19 million people subscribed to their H1N1 RSS feed.

When it was my turn, I held up two symbols of a possible future for public health campaigns: a tube of sunscreen and my mobile phone.

Weather report and sunscreen reminder

The Center for Connected Health conducted a randomized trial in 2008 using text messaging to send a daily weather report and reminder to apply sunscreen. The control group did not receive any reminders. Everyone got a tube of sunscreen with a monitor strapped onto it so every time the cap was removed, a text message was sent back to the researchers.  Study participants who received text reminders applied the sunscreen an average of 56% of the time, compared with the control group, which had a mean daily adherence rate of 30%.

With 85% of American adults carrying cell phones these days, it is time to think about how mobile, social technology can help public health officials do their jobs.

My role on a panel is often to provide baseline data that can serve as the context for the discussion. Here’s what I chose this time:

The Pew Internet Project estimates that 79% of American adults use the internet and many of them not only gather and share health information online, but make health decisions based on what they find (see the Pew Internet/California HealthCare Foundation report: The Social Life of Health Information).

56% of American adults have accessed the internet via a wireless connection, whether that’s on a laptop, desktop, mobile device, game console, or Kindle – we included all of those in our definition (see report: Wireless Internet Use).

Wireless internet access has created the state of being “always connected.” The consequence is that mobile is changing us, once again, as internet users.

It turns out that about 4 in 10 adults are what we call Motivated by Mobility. Mobile access creates a “continual information exchange” that feeds on itself and reinforces collaborative behavior.

For some mobile access is a supplement. For others it’s their daily bread.

Over the last few years we have been tracking the rise of wireless internet access, noticing significant differences between African American and white adults.  Our recent survey confirmed it: African Americans are the most active users of the mobile internet.

48% of African American adults have gone online using a mobile device, compared with 28% of white adults.

This survey was conducted only in English so the Latino sample skews up in terms of education and income, which means we see a higher than normal rate of technology uptake: 47% of Latino adults have gone online using a mobile device.

Differences between whites and African Americans are erased when we redefine internet access to include mobile access.

The consequence of this increased bandwidth and mobility is that these users are more likely than other adults to access health information online.

But just as mobile access is a supplement to traditional access, online health resources are a supplement to 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. As we saw in the Healthfinder.gov panel at the conference, low-literacy populations prefer to print out information. They are not likely to read on-screen. It is important to keep that option available.

But many 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 family members.

Technology can enable the human connection in health care.

Here are two examples of mobile, social technology and the democratization of health information.

The first example is PatientsLikeMe, a social network for people living with chronic conditions.

(By the way, Pew Internet surveys find that 35% of adults use social network sites like MySpace, Facebook, and LinkedIn. If you have not yet joined one of these sites, don’t hesitate. Seeing how these sites work will be as revolutionary as the first time you saw the Web.)

PatientsLikeMe is more like an information network than a social network since they are helping people to record the observations of daily living which can inform someone’s treatment. But they network those records so fellow patients can benefit from other people’s data.

Peer to peer advice turns out to be powerful and influential. A survey of HIV community members on PatientsLikeMe found that two-thirds of respondents said they are more knowledgeable about risks and benefits of a “treatment holiday” because of what they have learned from other users at PatientsLikeMe. Seven in ten said using PLM has increased their interest in results of tests ordered by the doctor treating their HIV.

These patients are under the care of health professionals, but exchanging data, insights, and information to take better care of themselves.

Back to Pew Internet’s survey, we found that 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.  The “just in time someone like me” is often a significant source of health information – how can public health campaigns be tailored to take advantage of this trend?

The second example is the text message campaign created by Connected Health. The messages were nothing fancy, just a weather report and a reminder to apply sunscreen, yet they increased adherence.  What other reminders or alerts can be sent via text messages? How can you enable the sharing of those messages?

Pew Internet surveys find:

• 6 in 10 e-patients access user-generated content related to health.
• 20% of e-patients have posted or shared such content.
• 53% of e-patients have consulted Wikipedia.
• Fully 60% of e-patients say that they or someone they know has been helped by online health information, up from 31% in 2006.
• The percentage who say they or someone they know has been harmed has remained flat – just 3%.

My conclusion: 8 in 10 adults have the basic capacity to receive a public health message. Figure out how to take advantage of that reality. But also keep in mind the 15% of adults who are “truly disconnected” – not only are they offline in an online world, but they are likely to say they don’t even know anyone who is online. They are down in a pocket, far away from the world of smart phones, and yet they are part of our future, too.

Jeff Lee of Distributive Networks then gave a very engaging presentation about how the Obama campaign harnessed their followers’ passion using ringtones, Zip code-targeted text messages, and other calls to action. He called SMS the FedEx of communications – messages are opened immediately. But he urged public health leaders to use mobile apps to push people toward deeper content on the Web or even a call-in center.

The take-aways I wrote down:

• Simple solutions map best to existing user behavior.
• Don’t underestimate data collection opportunities.

Bob McKinnon of YELLOWBRICKROAD switched gears by quoting Ralph Waldo Emerson’s dour perspective on technology, the gist of which can be summarized with this short quote:

The harm of improved technology may balance out its good.

I don’t have his slides, but I scribbled madly as McKinnon warned:

• Don’t rush to be new and lose your relevance.
• Beautiful websites and online campaigns fall flat without support from offline campaigns.
• Don’t underestimate the power of empathy in communicating causes (adding his own dig at Twitter: Can you tweet empathy?)
• Fear suppresses behavior, so encourage small steps.

With that, I’ll encourage you to take a small step and write a comment:

• Whether you were at the event or observing from the outside, what were your take-aways?
• What topics should be on the agenda for next year’s NCHCMM? (An organizer, @jaybernhardt, wants to know)
• Where do you come down on the social media & mobile apps question? Which audiences are ready for this stuff and which are not?

Esther Dyson, Jamie Heywood, Rep. Jerry Nadler (D-NY), and I were asked to take on a breakout panel entitled, “From Participatory Politics to Participatory Medicine: The Coming Revolution in Health Care.” Cool, right?

Esther Dyson, Jamie Heywood, Jerry Nadler, and Susannah Fox

Via email, Esther suggested we skip the usual speeches and just tell the audience the questions we’d like to be asked and have a truly participatory session:

• Jamie was going to talk about PatientsLikeMe, HealthDataRights.org, and the power of patients to take control of their own data.
• Esther was going to ask how openness, transparency, measurement, and sharing of data affect health care.
• I was going to talk about which tech trends might forecast higher (or lower) levels of involvement by all Americans in both participatory medicine and participatory democracy.

Then Rep. Nadler arrived and said he’d been told that this was a panel about health care reform. Well, kind of. Not really. But we had to get started.

It didn’t go well.

Check the tweets:

@RadioBabe Interesting panelists, interesting ideas, but overall this health care panel at #pdf09 has been awkward and disappointing.

@lolamacc health care panel = very scattered discussion with little focus, too many issues, little really that was clearly conveyed

@mpesce Wasn’t this panel supposed to be about participatory medicine? I don’t see a whole lot of that going on here.

Ouch! Nobody was nauseated, right?

When I described the situation to Chris Schroeder, CEO of HealthCentral, he reassured me: “Your panel didn’t fail. It sounds like the audience got to see first-hand just how far technology remains removed from the heart of the health care policy debate in Washington.”

I’m even more comforted by the tao of Ted Eytan which teaches that “no communication is ever over” and “everything gets more accurate with more interaction.”

Judging from the majority of tweets, we did get quite a few points across, so let’s build on that:

Read more about Esther’s quantification of everything and the principles of HealthDataRights.org. Where do you come down?

Check out PatientsLikeMe. Jamie says people who use it will live longer; people who don’t won’t. What do you think?

Dr. Google is a pretty good diagnostician, most people say online health info is helpful not harmful, but access is unevenly distributed. What’s up with that?

Please leave a comment here, on Twitter, point me to another venue, or otherwise continue the conversation.

Here are my prepared remarks for the “Navigating the New Health Care Delivery System” segment at the Health 2.0 meets Ix conference (with the lines I added to respond to other themes brought out during the conference in bold)

“Is Health IT the answer? Only if it helps foster relationships.” What a powerful statement about the role of technology in our lives. Ideo’s interviews uncovered trends which are reflected in the national phone surveys conducted by the Pew Internet Project.

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 family members.

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.

At any point in your last search for health information online did you feel any of the following things? At any point, did you feel…?

Based on those who look for health information online.

a. OVERWHELMED by the amount of information you found online
(We last asked this series in August 2006, when 25% of e-patients said yes)

b. EAGER to share your new health or medical knowledge with others
(51% said yes in 2006)

c. CONFUSED by the information you found online
(18% said yes in 2006)

d. RELIEVED or COMFORTED by the information you found online
(56% said yes in 206)

e. FRUSTRATED by a lack of information or an inability to find what you were looking for online
(22% said yes in 2006)

f. CONFIDENT to raise new questions or concerns about a health issue with your doctor
(56% said yes in 2006)

g. FRIGHTENED by the serious or graphic nature of the information you found online
(10% said yes in 2006)

h. REASSURED that you could make appropriate health care decisions
(74% said yes in 2006)

The “headline” number from this series was that last one: three-quarters of internet users who had recently looked online for health information said they felt reassured that they could make appropriate health care decisions. On the flip side, 25% said they felt overwhelmed (and a closer look at the data revealed that internet users with less education were more likely to report feeling overwhelmed).

If you had to choose two positive and two negative feelings to ask people about, which ones would you choose? Or, put another way, which two feelings would you cut — one positive, one negative?

I should have posted this when I posted my slides, but better late than never.

Remarks by Susannah Fox of the Pew Research Center’s Internet & American Life Project at the Connected Health symposium in Boston, MA, on October 27, 2008.

The Pew Internet Project studies the social impact of the internet. We have been tracking online life since the year 2000, when 46% of American adults had access to the internet and only 5% of homes had broadband connections. It was a pre-Flickr, pre-YouTube, pre-Facebook online world back then. Now three-quarters of adults go online, half of U.S. households have broadband access, and the internet has become fast, mobile, and social for a lot of Americans.

But before I tell you more about the present, I’d like to remember our history.

In December 2001 the American Medical Association put out a press release suggesting that Americans make a New Year’s resolution to “trust your physician, not a chat room” since the information found online puts “lives at risk.”

Of course most people ignored that advice and flocked online for health information, just as they ignored the advice of the recording industry and flocked to music downloading sites. 80% of internet users have looked online for health information. Gathering and sharing information online and connecting with people of like interests have become the new normal.

The internet created a way for people to pool knowledge and resources – and e-patients, often desperate to save their own lives, barged right in and set up shop. In 2002, the Pew Internet Project asked internet users to write essays about how they connect to online health resources. We heard from people who used eBay to buy hard-to-find home medical equipment. We read about old-school bulletin boards and listserves which serve as lifelines for people with rare diseases and conditions. We heard about how people participating in clinical trials found each other online, or as one e-patient wrote, “we are lab rats tapping out messages on the bars of our cages.”

Now, it is even more common to see people participating in social media.

52% of internet users watch videos on video-sharing site like YouTube or Google Video. Note that 72% of internet users age 18-29 watch shared videos.

37% of internet users upload photos to a website so they can share them with others online. Fully half of internet users between 18 and 29 share photos online.

29% of internet users use an online social networking site like MySpace, Facebook or LinkedIn.com. More than half of internet users age 18 to 29 use social networking sites.

12% of internet users participate in an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems. Nearly one in four internet users between 18 and 29 participate in these groups.

Much of this new content, created by users, is not vetted by any formal editorial process. Inaccurate and outdated information does exist online. Our surveys find that the internet’s fire hose of information can be overwhelming and confusing, particularly for people with a high school education or less, which represents about 40% of American adults. But there may yet be some hope.

You may have heard about Michael Pollan’s book, In Defense of Food. His answer to all our diet worries is summed up in seven words:

Eat food. Not too much. Mostly plants.

Tara Parker-Pope hosted a Seven-Word Wisdom contest on her New York Times blog. Here are my favorite entries:

Call Mom. Let her talk. Don’t argue.

Eat pie. Very good pie. Not often.

Make promises. Don’t break them. Find loopholes.

I think there is equivalent wisdom for our “information worries,” a filter for that fire hose of data & advice, imagery & sound. In health care especially people are under stress and need to process a lot of complex information. How can people possibly find the good stuff?

Medical librarians say people should check the source and date of the health information they find online. But few sites display those quality markers and few e-patients look for them. Displaying the source and date is of course a special problem for user-generated content. E-patients often want to share their knowledge or are looking for someone ahead of them on the treatment path, that “just in time someone like me” who can really make a difference. Social media are not traditional information sources and do not follow traditional rules. Most people under 25 might not even know those rules exist.

Plus there is evidence that we may not need those old rules. A study published in the journal Cancer found that the display of the source and date on a page is not correlated with the presence of high-quality information. The absence of those two markers is also not correlated with low-quality information. The one marker for inaccuracy found in the Cancer study was the presence of information about complementary and alternative medicine or CAM. CAM pages were 15 times more likely than other pages to contain inaccurate information. Going back to the Seven-Word Wisdom contest, the Cancer article might have given us a new set of rules for the Information Age:

Go online. Use common sense. Be skeptical.

That might resonate with people who say we should trust users to find the good stuff and ignore the bad stuff. Indeed, Pew Internet Project surveys show that this ad hoc system has worked pretty well. About one-third of e-patients say they or someone they know has been significantly helped by following medical advice or health information found on the internet. Just 3% of e-patients say they or someone they know has been seriously harmed by following the advice or information they found online. Reviews of the medical literature have also turned up very few cases of bad outcomes related to the internet.

But don’t you think it’s time for health care to take things to the next level? Beyond information gathering? My friend Charlie Smith of eDocAmerica has written about the “space in between “doctor knows best” and “leave the e-patient alone” and that is a high quality, interactive partnership between physicians and their e-patients.

The AMA may be comforted to know that Pew Internet Project data shows that a medical professional is the first choice for most Americans who are faced with a serious health situation. Our survey showed that eight in ten respondents who recently needed health information said they turned to a professional for advice. About half turned to friends and family; half also turned to the internet. In other words, professionals were the dominant source for people with health questions, which is not what we see in any of the other topics covered in the survey: education, taxes, changing job status, or Social Security. For those topics, the internet or a government agency played much more important roles than did professionals.

But the internet has changed people’s expectations of their relationship with health professionals.

Clay Shirky has told a story about a little girl who, when watching a movie at home, jumped off the couch and starting rooting around in the cables behind the TV. When asked what she was doing, she replied, “Looking for the mouse.”

Shirky’s conclusion is that four-year-olds know that a screen that ships without a mouse ships broken. Media that’s targeted at you but doesn’t include you may not be worth sitting still for.

That is where most health care is these days, stuck in the broadcast world when it could be transformed and transformative. E-patients know that health care that’s targeted at you but doesn’t include you may not be worth sitting still for. As e-patients are “looking for the mouse” in health care, I’d like to suggest that one possible answer is the concept of participatory medicine.

Participatory medicine is a cooperative model of medical care that encourages and expects active participation by all involved parties as an integral part of the full continuum of care.

Participatory medicine acknowledges that it’s not just patients who are looking for the mouse in health care. Doctors, nurses, hospital administrators, and other health care professionals are all looking for the mouse, too.

Reforming health care is too big for most people to grasp; creating spaces for participatory medicine is not. For example, e-patients are already experts at finding and sharing information online. If your organization is concerned about misinformation, flood the market with good information. Deputize e-patients with the best data. Make it easier for people to find and share information that you and your organization hold. Don’t hide your best information behind a subscription wall. Do publish in HTML or XML instead of in PDFs. Do open your site to comments or provide a way for people to email you. Do get your top executives to participate, not just observe.

But when health care does move to the next level, can we be sure it’s not leaving some people behind? Pew Internet Project research shows that the base of the internet is broadening. Where we once saw an internet population dominated by college-educated adults, we now see many people with a high school education or less going online. People with less education have lower levels of health literacy and numeracy – basic reading and math – which is a big deal when you are managing diabetes, for example. People with less education are less confident navigators of the online world.

The Pew Internet Project’s current estimate is that about 75% of adults and 95% of teenagers in the U.S. go online. Half of American adults have broadband access at home. 75% of American adults have a cell phone and many are using their cell phones to connect to the internet.

To unpack that further, my colleague John Horrigan has sorted American adults into three broad categories related to which technology assets they own, what actions they take with those gadgets, and the attitudes they express toward information and communications technology.

For example, how many people in this room agree with the following statements:

• I like that cell phones and other mobile devices allow me to be more available to others
• When I get a new electronic device, I usually need someone else to set it up or show me how to use it
• I often feel annoyed by having to respond to intrusions from my electronic devices
• I believe I am more productive because of all of my electronic devices

When you hear the phrase “2.0” you are hearing about an online world that is familiar to what we call the “Elite Tech Users,” who make up one-third of all adults. They have lots of gadgets and they like them. For them, the internet has changed from being slow and stationary to being fast and mobile. Elites don’t just surf through the online world, they shape it.

But as William Gibson has said, “the future is already here. It’s just not very evenly distributed.”

The Pew Hispanic Center and the Robert Wood Johnson Foundation came out with a study showing that most Latinos get health information from broadcast media – TV and radio. Further, the Center for Studying Health System Change just released their Patient Activism Measure. Their survey data shows that Latinos are less likely than other ethnic groups to engage with their care and become informed health care decision-makers.

Another study, this one by researchers at the University of North Carolina, found that online cancer forums are 98% white, 86% college-educated. The UNC researchers convened a meeting to discuss the “whiteness” of online health communities, and some of the reasons put forward for low participation among African Americans included:

- unfamiliarity with computers and even basic keyboard skills, especially among seniors
- rules against the discussion of God and faith
- historical distrust of doctors and medicine

Web 2.0 is not familiar ground for the majority of the U.S population. Many people could benefit from resources made possible by the participatory internet, but they may not have the skills, the need, or the desire to do so.

I’m interested in finding out more about this confluence of forces. What motivates someone to try a new technology? What makes them become an activated patient? Pew Internet Project data shows that half of American adults are low-tech, but there are leverage points that might help them to upgrade if they need to. The Center for Studying Health System Change data shows that 6 in 10 American adults are less than fully “activated patients” but notes that someone diagnosed with cancer is more likely than someone diagnosed with depression to be an engaged patient.

One possibility is to meet people where they are, not where we think they should be. Pew Internet Project data shows that African American and Latino adults are more attached to their cell phones than to the internet, to TV, or to landlines. Overall, 62% of Americans have some experience with “on the go” access to digital data and information – using their cell phones, PDAs or WiFi-connected laptops. Reaching people through their mobile devices could be a way to expand participatory medicine beyond the Elite Tech Users and activated patients.

The U.S. is facing significant challenges. The current financial crisis is putting the squeeze on families and businesses to find ways to cut costs. We have a growing population of older adults and a shrinking population of front-line caregivers, in both clinical settings such as nurses and internists but also at home, where so much caregiving takes place.

Most people under 40 are fully engaged with social media, but not yet dealing with chronic illness. Most people over 60 are starting to face chronic conditions, but are not fully engaged in social media. What might make those forces join together?

In the spirit of Michael Pollan’s Seven Word Wisdom, here is a challenge to expand the reach of health care:

Recruit doctors. Let e-patients lead. Go mobile.

I also challenge you to guard against the classic mistake of creating tools and systems that don’t place users at the center.

Don’t be the AMA circa 2001 or the recording industry, clinging to your own notions of what should be. Design for what could be.

Choose openness at every fork in the road. Join e-patients in making the choice to find and share information. Join the conversation that is already happening online. Join e-patients in pursuing participatory medicine.