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 — here in the comments 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

I spend quite a bit of time writing up survey data, working with moderately large respondent pools (N=2,253 is the number of people who completed my last health survey; N=609 is the number within that sample who are living with high blood pressure, etc.)

This morning I decided to listen to Patient Voices: Scleroderma as I crunched some data (N=269 – people with lung conditions; N=193 – people with heart conditions…).  What struck me, as I listened, is that there is something powerful & human about listening to patients tell their stories. So many people are living N=1. Not just because they have a rare condition, not just because they’ve been told their case is unique, but because they simply are individuals going through life, and health is just one aspect of who they are.

This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the funding and the stakeholders to create a significant new cancer organization in the Netherlands.

As I did my best to serve up relevant insights from my research, I kept wishing I could just replay the Patients and Online Communities panel at Health 2.0 Paris. And now I can:

If you don’t want to watch all 70 minutes, you can skip ahead pretty easily once the video starts to load.

My remarks start about 3 minutes in (here’s my earlier post about what I said) and we begin discussing participatory medicine at about minute 10. The conversation takes off from there.

Roberto Ascione of paginemediche.it tells why his site is a meeting ground for doctors and patients. “There is no one recipe to Health 2.0… this is an empowerment of the physician-patient relationship which is the foundation of good health care.”

Jamie Heywood describes why PatientsLikeMe — founded with a goal of drug discovery — is data-driven and why patient communities shouldn’t “lose the narrative, but encode the narrative.”

Gilles Frydman then talks about how ACOR is “all about the narratives” of the 650,000 people who have used it.  He mentions The Moment when a patient realizes that they must participate in their care, when they realize that every cancer patient is “going through a clinical trial with an N of 1.” As he says, “Cancer is the opposite of algorithmic medicine. It is the opposite of having high blood pressure” (and therefore individual stories are so important).

At about minute 21 (if you want to skip ahead), Christian Angele of imedo.de, talks about how his site provides a forum for people to create a community around their own perspectives and experiences as a patient — personal stories that generate discussion.

Neil Bacon of iWantGreatCare.org states that community self-reporting is key to measuring clinical outcomes. In fact, he says, patient satisfaction is as important a measure as “hard” clinical metrics, such as infection rates.

You get the idea (and I haven’t even addressed the excellent demos and Alex Schachinger’s remarks).

What I want to ask is: Which way forward for patient communities?

For example, can we construct a decision tree for an organization starting a community?

• What are the organization’s goals? Emotional support? Symptom tracking? Drug discovery?
• What condition or disease are you tackling?
• What country or region will you recruit from? (Gilles suggested, at one point in the discussion, that patient engagement is more necessary in the U.S. than in Europe because of the significant differences in care delivery. Alex Schachinger suggested that Germans and Americans have different concerns and sensibilities about online communities.)
• Does the organization have the resources to “go heavy” and create a complex database-driven site, or will it need to “go light” and stick with simple discussion forums?
• What are the resources of the people you hope to attract to the community? Do they have stable broadband access? Or do they rely on a mobile device for connectivity?

Would the decision tree look different for patients trying to decide which community to join?

• Is your condition rare or relatively common?
• Do you want join a local group, to meet people in your area?
• Do you want to cast your net wide and get international perspectives?
• Are you a Quantified Self-type symptom-tracker looking for tools?
• Are you looking for emotional support and personal connections?
• What kind of personal information are you willing to share online?
• How tech-savvy are you? Related: What kind of internet connection do you have?

What questions should we add to these lists? What other issues come up when patients gather online, either in small, ad hoc groups or large, organized communities?

Note: If you paused the video, skip ahead to the closing statements from each panelist — they are pretty fantastic (minute 63).

Regina Holliday's painting, "Give Us Our Dammed Data" (Photo by Cindy Throop)

17 authors with weapons in hand stare down upon the viewer. The three panel painting measures 60 inches by 144 inches. It is a very large painting, and yet it is crowded with those who have been hurt and those who have suffered. Every one of them is an author. Nearly everyone in the painting took the hurt and outrage they felt about a dysfunctional medical system and channeled that into a book. That book is their shield and their pen is a spear.

(Read Regina Holliday’s complete post, “Give Us Our Dammed Data” about her show at Clinovations in Washington, DC)

The best writers make you feel like you’re spending time with a wise friend — add some tears and laughs and you have Dave’s book. I wasn’t there for his whole journey, so I’m learning new things by reading about the scary, early days of diagnosis and treatment of his Stage IV cancer. And I love the chapter-by-chapter summary of Tom Ferguson’s white paper.

Tom posted only once to this blog — his blog — before he died in 2006 and it was a tribute to The Voice of the Patient. When a group of us decided to complete the white paper and continue the blog in Tom’s honor, Dave was not yet part of the group. Now Dave is not only part of the blog, but helped start the Society for Participatory Medicine and is a central figure in patient empowerment.

Dave dedicates his book to Tom, writing: “I never met you, but you guide me every day.” I bet there are people out in the world who would say the same thing about Dave, thanks to his writing — on blogs, on Twitter, and now in this book. Dave is the embodiment of the voice of the patient. Listen and learn.

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)

What are the best variables to consider when taking connected health programs from pilot to scale?

He imagines a matrix with three axes: severity of chronic illness, patient readiness, and technology readiness. That makes sense to me, as did BJ Fogg’s Behavior Model when Alexandra Carmichael described the three elements to me in words: Motivation, Ability, and Trigger.

But I felt like I could actually apply BJ’s model after seeing his simple diagram:

The element Joe is adding, which is key to health interventions, is the severity of illness (or seriousness of diagnosis). That echoes the findings of the Center for Studying Health System Change: 41% of U.S. adults are “activated patients” (the rest  tend to be passive and may lack the confidence to play an active role in their health). Cancer patients are among the most activated, whereas people living with depression are among the least.

It also resonates with the Chronic Quadrangle described in The Innovator’s Prescription (p. 161 if you are a total health geek and have the book handy). Diseases with immediate consequences vs. deferred consequences are categorized, cross-factored by their dependence on technology dependence vs. behavior dependence. Celiac disease is one example of a condition requiring extensive behavior change and immediate consequences for not complying with the best known therapy. Osteoporosis is on the opposite end of the quadrangle: minimal behavior change is required and consequences are deferred.

I would add yet another question to the conversation about scale: is the application social or not? In other words, is it a grab-and-go information hub (like Google) or is it a place where users are invited to sit down and stay a while (like Facebook)?

Adam Rifkin’s essay, Pandas and Lobsters: Why Google Cannot Build Social Applications… is a must-read on this topic:

After researching what pandas do all day, I was struck by how panda-like we are when we use the Internet.

Roaming a massive world wide web of forests, most of our time is spent searching for delicious bamboo and consuming it. 40 times a day we’ll poop something out — an email, a text message, a status update, maybe even a blog post — and then go back to searching-and-consuming…

The most successful Google applications serve such a utilitarian mandate, too: they encourage users to search for something, consume, and move onto the next thing. Get in, do your business, get out…

Facebook is a lobster trap and your friends are the bait. On social networks we are all lobsters, and lobsters just wanna have fun. Every time a friend shares a status, a link, a like, a comment, or a photo, Facebook has more bait to lure me back.

Which kind of user are you when it comes to health information? How has it changed under different circumstances? If you develop health apps online, are you aiming for pandas or lobsters?  Is it possible to do both?

I’ve started my own list of panda health apps vs. lobster health apps — if certain sites and apps pop into your head, please share them in the comments.

Speaking to the senior staff of the National Library of Medicine last week was like going before the best kind of murder board. Picture it: 30 of the nation’s smartest health information mavens around a polished conference room table, asking me sharp questions, suggesting new lines of inquiry, and offering their own insights. In other words, heaven.

Our jumping-off point was the Pew Internet Project’s latest research on internet penetration, mobile use, and the social life of health information. Here are my notes from Thursday’s meeting and some research questions I’m considering:

One of my hosts, Robert Logan, had seen my Patient Is In speech at Health 2.0 last fall and asked me to address similar issues — how people become activated seekers of health information. He also complimented the Pew Internet Project’s steady stream of data releases, which we are able to maintain because of the generous support of the Pew Charitable Trusts and the ingenuity of our small staff to squeeze the most out of our research budget.

My first illustration was a perfect example of a frequently-updated Pew Internet resource (internet penetration in the U.S.) and how the data can be viewed through a health lens.

Many health organizations, including the NLM, want to reach different age groups — online, offline, on a mobile device, etc. This chart shows that age continues to be a significant predictor for internet use: 93% of 18-29 year-olds go online, compared with just 38% of adults age 65 and older, for example. Education is another undeniable force: 94% of those with a college degree use the internet, compared with 63% of high school graduates (and just 39% of adults with less than a high school education).

I noted, however, that although most of our “oldest old” and least-educated are offline, they may have what we call second-degree internet access via their loved ones and friends. Half of health searches are conducted on behalf of someone else, not the person with their fingers on the keys, for example.

My second illustration was the first chart from Pew Internet’s Generations Online slide deck:

All the data in that deck is from 2008-9, but the trends hold true for 2010 (with significant increases across the board for social network site use).

When segmenting the online audience, remember that most internet users age 65+ stay in the shallow end of the pool — email and info-gathering — while younger internet users tend to venture to the deep end — uploading video, creating blogs.

There are exceptions, of course, and Pew Internet is tracking what may be an X factor: wireless internet use. We have identified a “mobile difference“:  wireless connections have a significant, positive effect on an internet user’s likelihood to engage in social media.

I noted that we also have identified what might be called a “diagnosis difference.” Our research on chronic disease found that living with such a diagnosis also has an independent, positive effect on a person’s use of social media for health.

This inspired a good sidebar discussion about patient activation, and what role it plays in online engagement with health. The Center for Studying Health System Change has found that just 41% of patients have the knowledge, skills, and confidence to manage their health, with cancer being at the “most activated” end of the spectrum and depression at the “least activated” end. (For background, please see “Development of the Patient Activation Measure…” For an overview of what I think, please see “Mobile could be a game-changer…” And I’d welcome other views and citations.)

Forrester has another helpful way to picture social media engagement: as a ladder, which people can climb up or down as their usage changes. I included the illustration from Josh Bernoff’s blog post, “Social Technographics: Conversationalists get onto the ladder” as my third illustration.

Next I featured two charts from my colleague Aaron Smith’s report, Mobile Access 2010.

First, I discussed the data showing changes in wireless internet use by demographic groups between April 2009 and May 2010. For example, in the spring of 2009, 57% of African American adults went online with either a wifi-enabled laptop or a cell phone. In 2010, their use jumped to 64% — a notable increase in just one year.

Fully 84% of 18-29 year-olds now go online wirelessly, compared with 69% of 30-49 year-olds, 49% of 50-64 year-olds, and 20% of adults age 65 and older.

I’m particularly struck by this stat: 20% of wireless internet users go online exclusively on a cell phone.

I summed it up in a tweet: “Information purveyors: Go mobile. Everyone else is: http://pewrsr.ch/Mobile2010”

The next chart focused on mobile activities among various age groups, particularly the stark differences between adults ages 18-29 and everyone over 30.

Fully 95% of 18-29 year-old cell phone owners send and receive text messages (and we know from our Teens and Mobile Phones research that the volume of texts is probably pretty high). Forty-eight percent of 18-29 year-old cell owners say they access social network sites on their mobile phones. And 40% of this age group watches video on their phones.

Cecilia Kang’s Washington Post article, “Going wireless all the way to the Web,” illustrates the trade-offs some people are making between small-screen wireless options and the luxury of a big-screen connection. As one 16-year-old said of sipping information through an iPod: “It’s way cheaper than a computer, that’s for sure,” he said. “But you also have to have a lot more patience.”

Looking at this data is like watching the effects of erosion on a coastline: the information landscape is shifting and the changes are picking up speed. As I’ve said before, if your organization’s information isn’t accessible and readable on a small screen, it’s not available at all to some groups. Now is the time to make changes to online services to account for both the popularity of mobile access and the way it is changing us as internet users.

My next illustration displayed the demographics of those who look online for health information, which mirror the demographics of the internet population (taking 10-20 points off the top for those who do not engage with health online — for example, older internet users who rely primarily on offline sources).

Two-thirds of those who look online for health information usually talk about it with someone else. The Pew Internet Project will focus on research questions about the who, what, where & when of  those health conversations in an upcoming survey. But the questions are pertinent to the NLM’s mission, too: What are people saying? Is the NLM helping to seed the conversation? How are you contributing to the spread of facts, the spread of science, the spread of evidence?

Since these demographics were nothing new to this group, I quickly moved on to our more unique data set, which focuses on people living with chronic disease.

One-third of U.S. adults are living with a heart condition, lung condition, high blood pressure, diabetes, cancer, or a combination of those diagnoses. Of those, 62% have access to the internet, compared with 81% of adults who report none of those conditions.

Statistical analysis finds that chronic disease has an independent, negative effect on someone’s likelihood to go online.

However, once someone does have internet access, chronic disease has an independent, positive effect on an internet user’s likelihood to use social media for health: to blog, to contribute to online health discussion, to access hospital reviews, doctor reviews, and podcasts. (For more on this topic, please see Chronic Disease in Data and Narrative.)

My take-away: Keep the reality of the current population in mind, but don’t count out the power of a life-changing diagnosis to affect the way someone gathers and shares information.

My closing slide is one of my favorite charts from our report, Chronic Disease and the Internet. Few people report harm when it comes to health information online, many more people report that it has helped them or a loved one.

The ensuing discussion allowed me to bring up some of my favorite examples outside the Pew Internet Project’s research scope:

Nicholas Christakis & James Fowler’s book Connected showed how obesity can spread through a network – but so can happiness. Behavior – both good and bad – can be catching. How can the NLM seed conversations happening online and offline, to spread good information and good behaviors?

The FDA and CDC teamed up to spread the word about the Salmonella outbreak last year, fanning out across platforms to get the word out, including the development of a recall widget. How can the NLM leverage the power of mommy-bloggers or their equivalents?

Health 2.0 Europe was alive with debate about government’s role in health and health care, including some heated exchanges about how to oversee the quality of online information. What if the NLM harnessed American ingenuity and the EU’s information quality focus? One answer: Pillbox

Google features MedlinePlus among the first results for health condition searches, as we’ve discussed on e-patients.net. Now Google’s top results for drug searches also yield links to NLM pages, as reported by Eileen O’Brien on the SirenSong blog. Should the NLM seek more placements such as these? Should the NLM maintain its own brand or should the National Institutes of Health emerge as the stronger, overall brand?

Procter & Gamble, among other companies, is scaling up their use of social media and cutting back on traditional market research. Their new research motto can be summarized as: “Listen more than ask.” How can the NLM harness the same techniques?

And as I so often do, I closed with this question: Health is social.  Health is mobile.  What are you spreading?

In May, I spoke at the Chronic Care and Prevention Congress about my most recent report, “Chronic Disease and the Internet.”

I talked about the social life of health information and the internet’s power to connect people with information and with each other.  Living with chronic disease is associated with being offline – no surprise. What’s amazing and new is our finding that if someone can get access to the internet, chronic disease is associated with a higher likelihood to not only gather health information but to share it, to socialize around it.

I built my talk around two examples of how health care can either take advantage of patients’ shared wisdom (and innovate) or ignore it (and fail).

My innovation example was CureTogether’s crowd-sourced migraine findings: 147 treatments were evaluated and ranked according to their effectiveness and popularity, with some surprising results. My fail example was taken from Diana Forsythe’s classic essay, “New Wine, Old Bottles.” Designers of a migraine information resource asked a single doctor what he thought patients should know, rather than going directly to the patients. Not surprisingly, the number one question asked by newly diagnosed migraine sufferers was not addressed: Am I going to die from this? Ridiculous to a doctor, but essential to a patient.

My talk concluded with a challenge to the group:

If chronically ill patients can find ways to connect and learn from each other, why can’t your organizations find ways to connect and learn from them?

Allan Khoury, MD, PhD, Chief Medical Officer of Walgreens Take Care Health Systems, asked me one of the first questions:

Should Walgreens train people in how to use PatientsLikeMe?

Whoa. Tipping point moment. Imagine the scene:

Here’s your new prescription for your life-changing diagnosis, ma’am, and here’s someone who’s going to show you how to track your symptoms and make sure the treatment is working for you.

Back on Earth, I hedged. I hadn’t even mentioned PatientsLikeMe. I’m not supposed to make sweeping judgements. So I did what I always do when I get a good question. I shared it.

First, I tweeted a more general version:

Intriguing Q after my talk: should Walgreens offer internet training, advice re pt communities? #hcsm

Joanna Ptolomey, via Twitter, voted for health literacy training “where people are living, working, existing.” So did Shelia Cotten. Mark Hawker clarified, “There’s a difference between training and education. Would need to be a combination to be beneficial in any way.”

But what if I had tweeted the original question, with its focus on PatientsLikeMe? Would it have invited a different response, one more focused on privacy,  such as this quote from a recent New York Times story, “When Patients Meet Online, Are There Side Effects“?

You don’t know who is being paid to moderate. You don’t know who’s listening in to your conversation. You don’t know what exactly they are focused on and what they are doing with the information. – Jeff Chester of the Center for Digital Democracy

Frankly I was more interested in the general response, whether someone had a small patient community in mind, like a Yahoo group, or a large one, like MedHelp, Inspire, or Diabetic Connect. (Plus we’re already having that privacy conversation elsewhere.)

The second thing I did was to email my friend Maxine Rockoff at Columbia University, who is one of my health education and internet literacy gurus. She sent back an amazing email with as many questions as answers: Should we teach general internet skills or hone in on specific tools, such as a personal health record or a certain community? And, of course, she also shared the question with colleagues, with amusing (and circular) results:

This morning I threw the question out at a Department of Biomedical Informatics faculty meeting and one response was “Go to the e-patient web site.”  So that brings it right back to you.   What would you and Ted Eytan and Dave deBronkart do?

The third thing I did was talk with Alexandra Carmichael of CureTogether and Jamie Heywood of PatientsLikeMe.

Alex saw this as an opportunity for behavior change and patient empowerment on a massive scale. She pointed me to BJ Fogg’s Behavior Model which “shows that three elements must converge at the same moment for a behavior to occur: Motivation, Ability, and Trigger.”

She noted that a newly-diagnosed patient, standing there with their new prescription, may have the motivation to reach for a different level of involvement in their health. Walgreens has the ability to be there, at the moment of motivation, and provide expert advice. Alex said the offer of patient community training at Walgreens would be a “hot trigger” – an irresistible opportunity that someone can take action on right away.

Jamie’s first reaction: We do not comment on ongoing negotiations. (I think he was kidding.)

He then pointed out that of course this makes sense as much for Walgreens as it does for patients:

“The formal medical systems (both providers and payers) have generally chosen not to enter into a rich meaningful dialogue about health with their consumers (partly because they make so much profit from their proprietary networks and partly because they may not want to learn what consumers have to teach them)…

“This leaves a huge gap and you see the pharmaceutical industry, pharma benefit management companies, pharmacies, lab/diagnostic providers, and everyone in the health product business scrambling to understand and integrate into the emerging health information network.  The good ones know that this is the equivalent to the introduction and rise of the search companies’ power on the internet.  They know that the health information network, when it is fully connected to consumers, will drive most treatment decisions and determine the value and profits of health products.”

The idea of a huge drug store chain partnering with a start-up is not so far-fetched, by the way. Rite Aid is now offering online consultations with pharmacists via American Well. What’s next?

(Walgreens photo courtesy of Urban Jacksonville.)

His own post on Embargo Watch: “More thoughts on ASCO: How the embargo policy can lead to hype”

Gary Schwitzer’s post on the HealthNewsReview blog: “A prime example of the problem with some TV physician-’journalists’”

Here’s an intriguing abstract that begs for further study: “Accuracy of cancer information on the Internet: A comparison of a Wiki with a professionally maintained database.”

Gilles Frydman makes two excellent points about it:

“It would be interesting to know which 10 types of cancer. Wikipedia pages in long tail are usually pretty lacking in depth.”

“PDQ exist in 2 versions: Patient & Health Prof. Abstract doesn’t say if one or both kinds compared to Wikipedia.”

Anyone out there have access to the full study? Please post what you find.

Stars & Bars: DC's flag

I think conferences are deeply affected by the spirit of their host city.  San Francisco has its hackers and dreamers, Boston has its entrepreneurs and ivy, Paris has its pomp and worldliness. At Health 2.0 DC yesterday, my city showed that it has passion and execution — at scale.

Leave it to others to point out this city’s shortcomings. The Washington, DC, I know draws in the best & brightest, engages in debate, and gets things done.

Tim O’Reilly recently said that within the federal government he has found “an intense passion among people trying to make change.”  Todd Park, CTO of HHS, expanded on that theme yesterday as he described his federal co-workers as just as smart, just as creative, and just as entrepreneurial as anyone he worked with in the business world.

We didn’t need to look much further than David Hale and his presentation of Pillbox, a partnership between the National Library of Medicine and the Food and Drug Administration. I caught his act at the Gov 2.0 Expo (see his slides from that event) but this presentation was even sharper:

1) Identify a need: Poison Control Centers receive 1.1 million calls about pill identification each year, at a cost of $50 a pop.

2) Gather a team: pharmacists, regulatory experts, computer scientists, database administrators.

3) Open up: you/your agency are the content experts; citizens are the context experts.

4) Get out of the way: drive traffic to your data, not your website.

Indu Subaiya moderated the next panel, which I can only describe as extraordinary:  an extraordinary cancer patient-researcher-activist (Josh Sommer) + an extraordinary cancer drug developer-philanthropist-innovator (Patrick Soon-Shiong) + an extraordinary geneticist-informaticist-strategist from the National Cancer Institute (Ken Buetow). To be perfectly honest, I was so enthralled by their exchange that I didn’t take notes – anyone have some to share in the comments?

Meantime, I do have some suggested reading. I first met Josh and Ken at a two-day Institute of Medicine (IOM) event last October which has now yielded a book, A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Care (free PDF).

Until the video from Health 2.0 DC is posted, please console yourself with this highlight reel from the IOM event’s patient panel Q&A.  Listen for this quote: “The key, one thing that’s needed…is transparent data. It’ll drive the cost of care down and the quality up…” – John Mendelsohn, president of the MD Anderson Cancer Center.

For more coverage of the Health 2.0 DC event, please see:

Jane Sarasohn-Kahn on Patient Power Through Data Liberación, and Private Sector to the Rescue – Health 2.0 DC Takeaways

Krystle Kopacz on Health 2.0 DC: Most Memorable Moments

Lygeia Ricciardi on Health 2.0 Came to Washington – and Now it Needs to Stay

Regina Holliday on A matter of perspective

Gilles Frydman on Why a Patient 2.0 Panel at Health 2.0 DC conference?

I admit to being a little skeptical. Scratch the surface of the available data sets and you’ll find the same health disparities discussed everywhere in public health: how much money you have is a big determinant for where you live and where you live is a big determinant of your health.

However, maybe there’s something to that weather analogy. As someone said, “Everybody talks about the weather, but nobody does anything about it.” The innovators being showcased today at the Community Health Data Initiative event are examples of people who want to talk about health disparities AND do something about it.

Pew Internet research finds that at least some Americans have an appetite for government data. Do they have an appetite for doing something about it?

At a sneak preview of today’s event, I saw five of the apps based on data made available by HHS. Tune in to hhs.gov/open at 9am Eastern to see these and other examples:

1) The Network of Care for Healthy Communities. A community dashboard with health indicators for individuals, families, and policymakers to use for “evidence-based decision-making.” Nothing too sexy here, but I was impressed by their efforts to tie county health data to state, regional, and national resources AND pending state and national legislation. The links are checked and updated every three days (oof, that is a lot of work).

Weather report: if you see a storm coming toward your community, these people can tell you where to buy an umbrella — or how to build a tornado shelter.

2) Microsoft Bing. Alain Rappaport and his team noticed that many people are searching for specific hospitals (38% of internet users according to Pew Internet research) yet the hospital comparison data was stuck in what they consider the “deep web.” So Bing now surfaces it instantly. This is just one example of how Bing is attempting to mash up health data, search, and data visualization.

Weather report: when people receive a diagnosis or are facing a health decision, search is often the first port in the storm. Bing wants to throw people a line.

3) GE Healthymagination. Lovely infographics of horrible realities, but apparently people like the cost of getting sick calculator.

Weather report: if data visualization alone can drive behavior change, GE has the art budget to be the Weather Channel of health data.

4) CommunityClash. Now we’re talking: an online card game to engage people in community health indicators. I can’t wait to pit cities against each other in imaginary health smackdowns (yep, I’m a health geek, but so are you if you are reading this). And you can share the results on Twitter and Facebook.

Weather report:  the winner of the Al Roker award for making serious data fun.

5) Google Health. Mashing up hospital data to make it manipulable, shareable, and mappable to answer the question: Where is the best place to have chest pain in the U.S.? You can embed your new custom, interactive map in a blog. My lightbulb moment was when I found out that you can add any other CSV file — such as an online community’s quirky, detailed hospital reviews (where’s the best take-out nearby? how’s the parking? where’s the nearest florist?)

Weather report: this is for the Weather Channel fanatics — people who have the time to track hurricanes and tell the rest of us what we need to know, when we need to know it.

Apps for America Contest Winners – Clay Johnson of Sunlight Labs will present the awards. (Check out the submission by hometown and e-patient favorites Regina Holliday and Ted Eytan.)

Open Government Ninja 101: Skills, Strategies, and Stealth – David Hale will tell the inside story of Pillbox, the result of a partnership between the National Library of Medicine and the Food and Drug Administration. (I saw an early prototype at HealthCampDC and resolved to get on Twitter so I could follow David & the others at that meeting — it was that transformative.)

Collaborate, Build, Deploy, Repeat: The Next-Generation Emergency Response Platform – Andy Carvin, Noel Dickover, Patrick Meier, John Crowley, Heather Blanchard, and Walton Smith will explain how online tools can be deployed to help people caught in catastrophic disasters worldwide. (Check out Crisis Commons for a preview.)

An App We Can Trust: Lessons Learned in Post-Katrina New Orleans – Denice Ross will show how her team used U.S. mail delivery data to create an ad hoc neighborhood census so services could be sent where they were needed most. (What are some other unexpected sources of data which might transform health care delivery?)

Healthcare Needs a Redesign – Jay Parkinson, now of The Future Well, will talk about what the government can do with technology to foster change in health and medical care. (Jay always blows people’s minds and I bet this will be no exception.)

How Open Data Can Improve America’s Health – Todd Park, CTO of the U.S. Dept. of Health & Human Services, will light up the place with his enthusiasm for his topic. (Catch his act – and count the “mojo” references – in this video with Aneesh Chopra. Wait, I mean Aneesh Chopra!)

What does it mean when millions of people flock to share/overshare information, even as Facebook’s default privacy settings have slowly become openness settings (but the company maintains radio silence)? Pew Internet research shows that a sizeable portion of the population (young people, in particular) carefully manage their online reputations, but where does that leave the rest? Consumer groups in the U.S. have requested an investigation and the Canadian and German governments are sharpening their knives, too.

Now, to add the health angle, PatientsLikeMe’s Ben Heywood posted yesterday about transparency, openness, and privacy:

We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe.  We believe in openness, but we also want people to knowingly make the choice to be open with their health information.

…Recently, we suspended a user who registered as a patient in the Mood community.  This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information.  Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user.  We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.

I love that word knowingly. Are consumers competent to make the decision to openly share their observations of daily living? Is it OK that a private company can leverage that data for profit (as long as they’re open about it)? What would be different about the Facebook controversy if Mark Zuckerberg had come out with a statement like that when the first stories broke?

I’m reminded of what Paul Ohm wrote about the broken promise of HIPAA:

[I]t is hard to imagine another privacy problem with such starkly presented benefits and costs. On the one hand, when medical researchers can freely trade information, they can develop treatments to ease human suffering and save lives. On the other hand, our medical secrets are among the most sensitive we hold.

I’m also reminded of my own research finding that people living with chronic disease have a secret weapon: Each other. Mobile, social technologies are tapping in to a human need to connect with each other, to share, to lend a helping hand, and to laugh.

I’d like to start a conversation about health privacy that includes an open dialogue about the risks and benefits of sharing. Who’s in?

On days where I could have benefited from the feedback of [Observations of Daily Living] the most, I was the least likely to be recording them. Why? On the worst days, I was literally too nauseated to answer my phone when it rang, let alone futz with one of the three Crohn’s symptom tracking apps on my iPhone – none of which even acknowledged my nausea and related gems as symptoms.

But even as his personal health deteriorates (and hopefully improves!) Kirienko is recording the lessons he’s learning about health care social media:

Promising practice:
We need to rethink our ODLs reporting methods. The obvious solution: include the ability for caregivers/very special friends to report ODLs. However, I live alone for weeks at a time. The less obvious solution: make it impossible not to report. As in, no status is in fact, a status.

Another really interesting insight relates to the fact that a small group of patients account for much of health care costs in the U.S.:

Contextual barriers to clinical collaboration via ODLs:
These solutions are most relevant to the 5% of a given patient population that have multiple co-occurring conditions and tend to account for over 50% of the cost of annual care. (see Medicare and complex conditions)

Promising practice:
We have to design for the 95% without sacrificing the 5%’ers for whom this technology has the potential to be truly life saving. This is where I think a multi-tiered approach to ODLs makes sense: maintain a lightweight interaction limited to the bare minimum of ODLs with the least effort to record, while revealing more granular reporting of an expanded ODLs set as needed for those who can use them.

His insights go straight to one of the points I make all the time: Patients and the people who love them are not just your target audience, but your colleagues. They are a resource for innovation and knowledge.

Reading his entries also makes me think there is a new category of e-patient: the participant-entrepreneur. Not content to stand by and let other people innovate for them, these people are creating the services, devices, and communities they need.

Other people I’d put in the participant-entrepreneur category:  Jen McCabe of Contagion Health, Alexandra Carmichael of CureTogether, Amy Tenderich of the DiabetesMine Design Challenge, and Matthew Zachary of the i’m too young for this! cancer foundation.  Who else should be on this list? What advice do you have for them? What condition needs attention from a new participant-entrepreneur?

These excellent questions were sent to me by Liav Hertsman and his colleagues at Tel Aviv University, who hoped that I had all the answers.

If only.

I can tackle the first one on my own, but I need help with the others. If you have any tips to share — observations, journal articles, researchers interested in similar questions — please add them in the comments.

1. How would you describe the typical online active e-patient in terms of demographics?
2. In which stages of the diseases do e-patients usually need medical information the most? Why?
3. In which stages do they search for information about drugs?
4. How substantial is the e-patients’ drug search in comparison with their overall search about health?
5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why?
7. What do the e-patients value more, specific information or general information? Is it treatment stage related?
8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why?
9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why?
10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization?
11. What causes an e-patient to return to a specific health site?

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?

I call this “health geek radio” because you should just listen while you are doing other things – the visuals aren’t great.

“Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to demand our information.”

“When people take a participatory role in their health, we see improved outcomes.”

These are just  a few of the insights you’ll hear if you listen to the full audio track of my conversation with Thomas Goetz, author of The Decision Tree:

However, if you can’t spare the whole hour and 15 minutes, you can just dip in to the #decisiontree stream:

Leroy Jones captured the audio for our exchange about family history, genetics, disparities, and how wireless access is transforming our understanding of the “digital divide.”

Mark Scrimshire wrote a very good, short summary of the event as well as a follow-up post, Should patients have access to their data?

Mary Fletcher Jones created a video excerpt, in which Thomas commiserates with me about how depressing data about chronic disease can be, but how, on the flip side, it is inspiring the see the possibilities of open sharing such as on CureTogether and PatientsLikeMe:

I loved seeing all the tweets during and after the event, including one from Alan Viars affirming Thomas’s assertion that pregnant women are natural Quantified Selfers — he had no idea that his own wife has been keeping a symptom-tracking spreadsheet!

For those who were there, or tracking the tweets, what has stuck with you?  What other questions do you have for Thomas or for me?

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?