On October 20-21 in Boston, the Connected Health Symposium will present the latest opportunity to attend a fantastic health care innovation conference. If you’re interested, click to view the PDF invitation from Joe Ternullo, the organizing chair of the event. Essentially, patients and caregivers who would like a free pass should send Joe an email: jternullo (at) partners.org.

If you’d like to read my reactions to last year’s symposium before you make your plans, here are a couple posts:

The Future of Health: Robots, Enchanted Objects, and Networks

Connected Health: patient networks panel

If you’d like to learn more about how Medicine 2.0 included e-patients, please see:

An Open Letter to Stanford

Announcing Medicine 2.0 Stanford ePatient Scholarship Program

There are many more conferences and opportunities for learning. Here are some lists I found:

Global Event List for Health Innovation

Alex Albin’s list of upcoming conferences

HealthCamp Calendar

What other events are on the horizon? What are your observations about including patients and caregivers in health innovation events?

Forgive me for mixing my metaphors (or whatever it is I just did), but even though there are just a couple dozen words of regulations at issue here, this is a big deal.

When HIPAA established a federal right for each individual to obtain a copy of his or her health records, in paper or electronic format, there were a couple of types of records called out as specifically exempt from this general rule of data liberation, in the HIPAA Privacy Rule, 45 CFR § 164.524(a)(1): psychotherapy notes, information compiled for use in an administrative or court proceeding, and lab results from what is known as a CLIA lab or a CLIA-exempt lab (including  “reference labs,” as in your specimens get referred there by the lab that collects them, or freestanding labs that a patient may be referred to for a test; these are not the labs that are in-house at many doctors’ offices, hospitals and other health care facilities — the in-house labs are part of the “parent” provider organization and their results are part of the parents’ health records already subject to HIPAA).

(“CLIA” stands for the Clinical Laboratory Improvement Amendments of 1988, which established quality standards for certain laboratory testing.)

This carveout of lab results from patient-accessible records has long been a thorn in the side of the e-patient.  This month, the federales announced that they would step forward as Androcles to the e-patient lion (to jumble a reference or two), and pull out the thorn, by proposing to amend both the CLIA regs and the HIPAA regs.  The HIPAA regs include the exception described above: all records must be made accessible upon request except labs and a couple others.  The lab results exception will be deleted from the HIPAA regs if the change is finalized.  The CLIA regs prohibit lab delivery of results directly to patients.  The proposed amendment says that the labs “may” release the results directly to patients.  The net effect is that patients will have the right to request the results, and since labs will be permitted to release them, they will have to do so.

As some readers will recall, HIPAA regs were subjected to a state-by-state “pre-emption analysis” when they came out.  (Generally speaking, Federal law “pre-empts” state law unless state law is more protective of an individual’s rights or health.)  The feds note:

A number of States [most, actually] have laws that prohibit a laboratory from releasing a test report directly to the patient or that prohibit the release without the ordering provider’s consent. If adopted, the proposed changes to § 164.524 [of the HIPAA regs] would preempt any contrary State laws that prohibit the HIPAA-covered laboratory from directly providing access to the individual.

Thus, labs in most states have some work to do in figuring out how they will actually release results directly to patients once the regs are finalized and effective (which could be about a year, folks, so sit tight).

Here’s where it gets fun, folks:

While individuals can obtain test results through the ordering provider, we believe that the advent of certain health reform concepts (for example, individualized medicine and an individual’s active involvement in his or her own health care) would be best served by revisiting the CLIA limitations on the disclosure of laboratory test results.

CMS goes on to say that the HIT Policy Committee  at ONC, established by the HITECH Act, says that “CLIA regulations are perceived by some stakeholders as imposing barriers to the exchange of health information.  These stakeholders . . .  believe that the individual’s access to his or her own records is impeded, preventing patients from a more active role in their personal health care decisions ” … so we’re going to change them.  [Paraphrase and emphasis mine.]

Let me restate this, folks: the regs are being changed to give greater patient access to health data not because of a recent change in the law, but becuase patients and patient advocates spoke up, and the HIT Policy Committee got the message.

I had the opportunity to hear Dr. Farzad Mostashari (National Coordinator for Health IT), Lygeia Ricciardi (Senior Policy Advisor for Consumer eHealth), and Jodi Daniel (Director, Office of Policy & Planning) speak at an ONC town meeting at this week’s Health 2.0 conference and they are nothing if not passionate about promoting patient access to health data. (Please take a look at my mini video interviews with Dr. Mostashari and Ms. Ricciardi, if you need any confirmation.)

This change may improve patient access to lab results, but only if the right to obtain the results is ushered in together with an education campaign that alerts patients to this new right, and if the results are presented in a manner that includes some minimal level of interpretation (and I recognize that too much interpretation will cross the line into the communication that needs to take place between the patient and his or her clinician).  On the question of how lab results should be presented to patients, at Health 2.0, Thomas Goetz, of Wired magazine, presented a  patient-friendly lab report tool, to be rolled out soon by his company, 1 + 1 Labs.  Other approaches, of course, are possible, since numerous institutions already provide this data directly to patients.

A certain percentage of lab results never make their way to the patient — and the patient education piece of the rollout could result in that percentage being reduced, or even eliminated.

There is opposition to the proposed rule by some providers, who express a concern that a patient who receives lab results directly may well (a) misintepret a value that is “normal” for the population at large but that might not be “normal” for her and/or (b) fail to communicate with the clinician who ordered the test.  In our fee-for-service world, some cynics may say that some clinicians are being inappropriately incentivized to seek another billable patient encounter for discussion of results.  In the future of bundled, episodic, prospective payment systems, this would not be a concern.  In fact, since we will be asking the entire health care system to be doing more with less as a result of the nation’s fiscal and political environments, frictionless sharing of information should be welcomed by providers.  Providers will continue to receive lab results, and will continue to be expected to discuss them with their patients.

Comments on the draft rule are invited, and the Society for Participatory Medicine will be supporting this change.

That happened to me most recently at the mHealth Summit and the guy was Matt Wiggins of Remedy Systems, which has developed a prescription routing app that works with SureScripts. John Maschenic, a Verizon Wireless executive, had just made a pretty skeptical comment about the market for health apps, saying essentially (according to my notes) “look at what people pay for — music, not health.” And Matt shot back (again, according to my notes): “We’ll just keep building our company and you can read about it later in the New Yorker.” Anyone who says that is going to get Googled, right then & there.

Since there is no video of the mHealth Summit panel, I’ll provide Matt’s short presentation at Health 2.0 San Francisco (I *knew* I’d seen him somewhere before):

His app looks pretty interesting, but it’s not as intriguing (to me) as his vision for health care transformation:

There’s never been a revolution that’s happened from the outside, whether it be political or cultural, that topples the internal system. Great ideas from the outside percolate and get picked up by strategic insiders then brought to their platforms and distributed through them. That’s our model.

Thoughts?

But the one that turned my head around was a smaller meeting here in DC that is getting less attention in the blogosphere/Twittersphere, “Online Social Networks and Smoking Cessation: Strategic Research Opportunities.” It was sponsored by the Schroeder Institute for Tobacco Research and Policy Studies, which is part of Legacy. About 100 people from many disciplines – academics, activists, counselors, federal agency reps, and (in the “patient” role) ex-smokers.

Prior to the meeting we were all sent a huge briefing book of academic journal articles and the morning’s speakers focused on the theories laid out in those articles, many of which didn’t directly relate to smoking cessation. My favorite, of course, was Nicholas Christakis, author of Connected, who had not only the most interesting data on social networks and smoking cessation, but delivered it in beautiful data visualizations.

Directly after lunch, five ex-smokers took the stage under the title “End User Panel” which I found a bit odd (end user of cigarettes? end user of social network sites? end user of health care?). After all the theory covered in the morning, it was refreshing to hear from people who actually used online social networks to quit smoking and help others to quit. They got more questions than any other speaker, including Christakis, as researchers lined up to gain insights about what worked and what didn’t.

Later in the day we broke up into working groups to discuss what research questions we would tackle if we had unlimited funds (ie, let your imaginations run wild). Each group had its share of academics and front-line advocates, so it made for an interesting exchange of ideas. Example: the PhD who said, “what we really need is a theoretical framework,” and the smoking-cessation counselor who immediately countered, “what we really need is a strategy to stay ahead of the tobacco industry.” Need I say more about the power of having a diversity of perspectives in any discussion of health behavior?

For more on the same topic, please see:

The business of patient engagement: should consumers be regulated? by e-Patient Dave (where I first posted this comment)

Patient Voices at CHCF’s Chronic Disease Care Conference, by me (2008)

Patient Involvement Makes People Smile, by Ted Eytan (2008)

Blogging Crohnology.MD’s creative process (with a patient at the helm), by John Liesveld and Nikolai Kirienko (2010)

Patients bringing it all to the table, by Regina Holliday (2010)

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).

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?

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?

Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking root: clear labeling on drugs & food, passive tracking of our exercise routines, open access to our health data.

There are enough lessons for self-improvement in the book that I found myself comparing it to What to Expect When You’re Expecting, but since Goetz focuses on the big picture (prevention, diagnosis, disease management) it is more like What to Expect When You’re Expecting a Long Life.

Unlike the pregnancy bible I read 10 years ago (and more than once threw across the room), Goetz doesn’t preach from a lofty whole-grain pulpit. He  doesn’t think we should ask people to do more, nor should we scold people for every mistake they have made, but rather we should give them tools to make better health choices.

For me, it sparked a renewed interest in tracking my own health. I’m not going all Quantified Self yet, but I am interested in a few key variables, like how far I run, my weight, and my cholesterol levels. And yep, I’m just writing things down, as Amy Tenderich recently wrote. That’s participatory medicine, too.

Readers of this blog are probably familiar with many of the companies and studies Goetz profiles in the book: the Framingham Heart Study, CureTogether, PatientsLikeMe, Nike+, 23andMe. I learned new things about each one and now have better talking points when I’m explaining Health 2.0 to newcomers. In fact, I got the feeling that this was a reason why Goetz wrote the book: for all those public-health nerds and personalized-medicine geeks who wish they could explain to people why it is just so awesome that we can calculate our risk for heart disease or cancer. You know how MDs are always asked for cocktail-party diagnoses? This book is for all the MPHs who stood nearby wishing that someone would ask them for on-the-spot health advice.

If I’ve sparked your interest in the book, check out the following:

Brian Ahier’s review: Data not drugs

Kent Bottles’s review: Check Lists & Decision Trees v. Spontaneity & Imagination

Short video introduction: The Argument for Better Health, in 3 Minutes & 53 Seconds

I prefer to turn the question around now and look at the benefits of publicness that we lose when we make something unnecessarily private. I’ve said that revealing my prostate here brought me great value: support, links to sources of information, incredibly candid and helpful previews from patients who’ve gone before, and the opportunity to spur others to check for the disease. Without revealing my cancer in public, I’d have received none of that benefit. I also argue in WWGD? that there’s value in the aggregation of our knowledge: if we all chronicled what we were doing 24 hours before the onset of my other condition, heart arrhythmia, would doctors find new patterns? If we all shared and could analyze our repair records for our Toyotas, would we surface dangerous flaws earlier? Not revealing such data may indeed someday be seen as antisocial.

The first time I met Gilles Frydman, I asked him about ACOR‘s privacy policy. He shrugged and smiled, “Our policy is that you have no privacy.” Social sharing on the ACOR listserves is expected, if not required. That prepared me for meeting Ben & Jamie Heywood, whose ferocious belief in openness has found expression in the PatientsLikeMe platform.

Ben, Jamie (it turns out), Gilles, and I will be on a “Patients and Online Communities” panel together at Health 2.0 Paris (along with four stellar EU panelists – check the agenda). It’s a hugely broad topic and I’m already thinking about the issues I’d like to discuss (including openness, health data rights, and whether consumers really understand the choices they make). What else should we talk about?

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.

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.

The first presentation was by the always-charming Ben Heywood, one of the co-founders and driving forces behind PatientsLikeMe.com. Unless you’ve been sleeping under a log for the past 2 years, you should already be familiar with PLM and its focus on data-driven records, looking for reliable trends in a number of disease conditions. Their latest condition is called “mood” and unfortunately clumps a bunch of mental disorders (which are distinct entities, so I’m not sure why they refer to them as one) together. Heywood spoke for about a half hour, outlining PLM and some of the great work its doing so far.

Heywood also spoke a bit about their Openness Philosophy. PLM makes money by selling the data you give them to pharmaceutical companies and device manufacturers. These companies buy the data not for marketing purposes, but for help in their R&D efforts. It’s a unique, sustainable business model, assuming the companies actually do find value in the data (as I suspect they do).

After Heywood’s presentation was completed, Wade Roush, Chief Correspondent for Xconomy, stepped in and introduced the panel. Each person spoke for about 10 or so minutes about their company and was asked a few questions by Roush, who was on-the-ball as the moderator.

First up was Matthew Jarman, Vice President, Corporate Development, of American Well. American Well is a company that allows you to talk to a doctor anytime online via a chat application. It’s a fee-for-service company and I’m not sure how well it does when free alternatives, like MedHelp.org are available.

Aaron Day, Chairman & CEO of Tangerine Wellness spoke next about his company’s focus on helping companies with a wellness program tailored to losing weight. An interesting focus on corporate America, but unfortunately wellness programs and employee assistance programs are the first benefits to go (even with a positive ROI) in tough economic times. Despite the current recession, Tangerine is reportedly doing well.

Stan Nowak, President of Silverlink which uses old-school technology (the telephone!) to send automated reminders to people via the telephone about health issues. Companies can use the service for everything from health education services to medication compliance reminders. The platform is very customizable and user-friendly.

Jack Barrette, Founder and CEO of WEGO Health started out at Yahoo! Health. After figuring out they weren’t going to quite “get it” when it comes to the opportunities available in health topics, he struck out on his own and has created a social network of “leaders” or health advocates in dozens of health conditions. I like the idea of “expert” recommended resources in health, given the vast quantity (and varying quality) of material available online. I think WEGO has some good legs to stand on, but is a fairly quick and obvious candidate for acquisition by a savvy e-health company.

Robert Reid, the President of Endovascular Forum, finished off the presentations of the roundtable. The Forum is a doctors-only social community online where endovascular doctors can go and present cases and engage in consultations with one another.

The presentations were good, but most people I suspect came for the roundtable Q&A and I felt like too much time was spent on the presentations and too little time on the Q&A part. The room was packed when the event began at 6:30ish, but had virtually cleared out (more than half were no longer in the room) by the time the Q&A began at 8:00pm. Thirty minutes for questions just wasn’t enough time.

One of the best questions/observation came from none other than our own e-Patient Dave, who noticed that there was very little consumer focus in the companies presenting. When people hear terms like “Health 2.0,” they assume you’re talking on some level about social networking and empowering users with their own creation and networking tools. None of the companies at this event, except PLM, seems to do that. That’s not the companies’ fault, but it was an interesting observation nonetheless.

The pre-event social hour was perhaps the best part of the event, allowing people to meet and talk to others interested in the Health 2.0 world in the Boston area. It was a good event and I’m likely to attend the next one.

The author, Jane Sarasohn Kahn, reviews the multitude of reports and survey data that have been published about what consumers are doing online in regards to their health. The first chapter is just a brief overview of what is social networking, the backbone of Web 2.0.

The second chapter seeks to help us define Health 2.0 and focuses on the concept of the “power of collective wisdom.” Repeating James Surowiecki’s contention that crowds often may be smarter than individuals, the author suggests this is the underlying power of Health 2.0 — all of our minds put together work better than any one of us. Perhaps because professionals most fear misinformation being exchanged on social support groups, this is the focus of those who examine such groups.

Both authors however miss perhaps the most powerful aspect of all — the emotional and psychological support that people receive when engaged in a social, group environment. When dealing with life-threatening illness or disease, such psychological components can often be just as important as the information itself. Sadly, as is so often the case when people start throwing around terms like “Health 2.0″ and talking about the “collective wisdom of crowds,” the psychological and emotional support components of these social groups isn’t even mentioned in the report.

Chapter two also discusses “lessons learned” about the convergence of health information and technology. The first lesson is about privacy concerns of consumers, but only mentions in passing that privacy and social networking are virtually incompatible with one another. Many social networks in health don’t restrict search engines from indexing their content, so a simple search on anyone’s user name means I can conduct a pretty thorough health history search on that person. Consumers aren’t even always aware of this trail of health breadcrumbs they’re leaving around the Internet and are surprised when they learn it’s been connected to their real life identity.

Other lessons learned including the fact that this remains a legal gray area for organizations to become directly involved in (in terms of liability concerns), and return on investment remains hazy at best (even huge mainstream social networks like Facebook and Myspace have yet to find significant ways to monetize their businesses). The report also notes that health insurers and doctors’ organizations may see little use or benefit by encouraging patients to talk with one another — it will only undermine their own authority. Indeed, this is usually one of the concerns of most doctors who hear about these networks, along with the concern about misinformation being spread by such groups.

E-patients want to learn to become better informed about their choices, and to an existing healthcare business or professional, that could be dangerous. Information is power, as they say, and traditionally information about how healthcare works in the U.S. has been cloaked in secrecy — How much does this test cost? Why aren’t you ordering this test? Why did you recommend this procedure over another? Health 2.0 networks seek to open up the health industry and help consumers get real answers to questions such as these.

Chapter three is a brief 2 1/2 page dive into the business of Health 2.0 sites and starts with advertising. Advertising and sponsorships easily remain the primary revenue drivers for all health websites, including those such as WebMD and RevolutionHealth. Even patient bloggers and other Health 2.0-oriented websites (such as Diabetes Mine) support advertising, because it helps pay the bills in a way that no other model has proven to work. Other business models, such as information aggregation and private labeling (which is really just organization-specific advertising that sponsors a specific service) mentioned in the report, are far less proven and are embraced by only for a handful of companies in this space. Time will tell whether any business model that doesn’t have advertising or sponsorships at its core will be successful long-term.

The final chapter in the report breaks out the usual crystal ball to try and foretell what is going to “stick” with consumers in Health 2.0 in the future. Health ratings is the first bet, which is a pretty safe bet given the dozen or so websites and organizations that already offer such ratings. Health ratings systems have been available now for over 5 years, so there’s already a pretty good track record for them for things like medications and treatments. The real question will be to see whether ratings for doctors and hospitals will be as successful.

Another prediction is that doctors and patients will be peers in the same social network. MedHelp.org has such a platform, and it’ll be interesting to see how it will grow in upcoming years. A related prediction is that social platforms will be “knitted together” to offer more collaborative opportunities amongst existing social networks.

Collaborations may produce unlikely combinations that, together, may help to disrupt existing models of healthcare. This is certainly possible, as it has been hypothesized in the past that such combinations could be game-changing. But as with the dot.com boom, we have plenty of examples of where such combinations never amounted to much in the claimed synergies (most famously, Time Warner and AOL). Such partnerships often seem more hype than reality. The report notes that GE is planning to leverage multiple media outlets in this manner, yet it seems like this is just another example of Big Corporation driven healthcare and bears little resemblance to what most people think of when they think of Health 2.0.

The last few predictions, about entirely new health companies created just to take advantage of the Health 2.0 trend, mobile phone possibilities, and new patient opinion leaders, are safe bets, but not anything really visionary. Startups are common online to take advantage of any emerging trend, virtually every business plan includes a mobile component, and patients have been opinion leaders in certain areas for some time now.

Finally, the implication in “The New patient Opinion Leader” section that old-style online virtual support groups didn’t result in “practical solutions to chronic health challenges” really seems to be off the mark — indeed, such support groups remain the most popular and widely used forms of communication amongst patients online today. The Internet is a big place and can support all styles of groups — those looking for something new and more socially-oriented, and those who feel comfortable with their existing social networks using more old-style tools (such as forums or mailing lists).

If you’re interested in an update on the Health 2.0 space, the 17 page report is an easy, quick read and has a few insights worth your time. It is probably a report better read by people who have little information about this space, and need to get a good, short overview of it — like a manager, director or VP who thinks their company or organization needs to know more about Health 2.0 in order to leverage it or address it in some manner.

[Most Americans] want the convenience of e-mail for non-urgent medical issues, but fewer than a third of U.S. doctors use e-mail to communicate with patients, according to recent physician surveys.

“People are able to file their taxes online, buy and sell household goods, and manage their financial accounts,” said Susannah Fox of the Pew Internet & American Life Project. “The health care industry seems to be lagging behind other industries.”

Isn’t it ironic that you can engage in the most sensitive of financial transactions, ranging from filing your taxes, managing your bills and bank accounts, and buying and sellings thousands of dollars worth of stock online. But you can’t email your doc, look at your own medical charts or lab results, or virtually manage anything having to do with your health care. Fidelity can tell me how much money I’ve saved for retirement in two clicks of a mouse. Yet my local doctor/hospital combination can’t give me access to my medical record, lab tests, or billing records.

Are doctors’ fears founded? Well, not via any rational reading of the research:

Most studies have shown patients don’t abuse e-mail. They generally don’t deluge doctors with rambling messages, and Internet exchanges may even help doctors’ productivity and cut down on office visits.

For example, a 2007 University of Pittsburgh study published in the journal Pediatrics followed 121 families who e-mailed their doctors. Researchers found 40 percent of e-mails were sent after business hours and only about 6 percent were urgent. Doctors received on average about one e-mail a day and responded 57 percent faster than by telephone.

The problem is that whenever new technology is introduced, there is a temporary lag before it is completely and wholly embraced. This lag is more pronounced with technology introduced into a specific field or industry. Automobile unions didn’t just one day embrace the use of robotic assemblers in car factories — in fact, they fought long and hard to prevent their use for years. The Web was introduced long before it gained sufficient momentum to host the likes of Facebook. Virtual worlds have existed online since the 1980s, but only now seem to be coming into their own.

Computers have made significant inroads into the health care field in the past decade, especially for doctors’ own use. They’ve already helped reduce prescription and medication errors, and have been invaluable in speeding up imaging and making technology like functional MRI possible.

But some things, like breaking down the doctor-patient communication barriers, are not just a function of technology and technology adoption. There are significant psychological and sociological factors at work here, and only time and a new generation of e-patient-friendly doctors is going to change them wholesale.

Until that time, you’ll just have to get used to your doctor not answering your email.

The most serious error is the claim that the greater volume a website has of doctor ratings, the more reliable or statistically valid it will become.

It’s a matter of statistics: The more reviews you read, the more likely you are to get an accurate assessment. “I would check a lot of different Web sites,” says Carol Cronin, executive director of the Informed Patient Institute. “Look across them, not just within one.”

Speaking of volume, a common concern about doctor rating sites is that one angry patient can make multiple nasty comments, using a different name each time (or, conversely, that the physician herself could go on and make multiple glowing comments).

But Martin Schneider, chairman of the Informed Patient Institute, says these sites have ways of detecting when one person is making several comments under different names. Back in the 1990s, Schneider was president of a now-defunct doctor rating site called thehealthpages.com. “Even back then, we had to the technology to stop that from happening,” he says.

These claims are commonly made, but they are largely incorrect. Here’s why…

In survey research (which is basically what a doctor rating site is trying to be), you need a sample that is both large and randomized. That is, you do not go out and post an announcement saying, “Take our survey if you think you have depression” if you’re looking for an unbiased data sample on depression in the general population. You need to have a group of people that both have and don’t have depression in order to obtain generalizable results.

The same is true with ratings sites. They may get the volumes needed, but none of these sites have any way of addressing the biased sample problem. People who rate their doctors are likely to fall into one of two categories — they either had a horrible experience with them and want others to know, or they had a wonderful experience with them and want others to know. But most people who fall in between these two extremes and have run-of-the-mill experiences with the doctor will likely never rate, because they have little incentive to do so.

You will also need a humongous number of patients rating each doctor — at least 20 to 30% of their entire patient list — in order to for the ratings to start gaining enough power to be reliable and valid (notwithstanding the population sample bias issue).

CNN admits as much later on in the same article quoting Dr. Robert Wachter:

While patient reviews might be useful, they have several clear drawbacks, our experts say. First, many doctors have just a few reviews or none at all. Second, even if a doctor has 20, 30, 50 or 100 reviews, that’s still only a small fraction of his entire patient population — and a warped fraction at that.

“The person most likely to write is the one who’s most enthralled with the doctor, or the one who’s most pissed,” Wachter says. “You’re getting a skewed view.”

The other advice — decide what’s important to you, look for patterns in the ratings, look for specifics in people’s ratings of their doctor and put more weight onto detailed reviews rather than general comments, and consult objective data already available — is generally solid, but still doesn’t address the foundational statistical problems with these types of online ratings systems. All the business people gloss over these problems, but if a rating isn’t scientific, its value is diminished substantially.

And honestly, Martin Schneider is a bit naive if he thinks it isn’t a simple thing to rate one doctor multiple times on all of these sites. Simply by clearing one’s cookies, using a few webmail addresses and using a Web proxy, you can register as many accounts as you would like on any of these services in a matter of minutes.

They suggest, “As the number of women using the Internet for health information increases, the importance of user-generated content (“UGC”) also becomes vital – providing women with the opportunity to engage in health conversations online. The comScore study evaluated the use and appeal of UGC – such as blogs, forums, or chatrooms – among women seeking birth control information online… These insights confirm the already popular industry trend toward more online health discussion.”

In their press release they don’t highlight the finding that 82 percent of the respondents also turned to medical professionals for information. And what about the 51 percent that discusses birth control options with family, friends, and their significant other? Why is it not surprising that “Through its proprietary technology, comScore measures what matters across a broad spectrum of behavior and attitudes. comScore analysts apply this deep knowledge of customers and competitors to help clients design powerful marketing strategies and tactics that deliver superior ROI.” So bottom line — comScore is recommending that pharma get on the Health 2.0 / UGC bandwagon because it’s a good way to market birth control to women.

If you add up all the numbers in the survey (82 percent, 60 percent, and 51 percent) it’s clear that most women in the study are consulting multiple sources. I’d like to think these women are the e-Patients. Being an e-Patient is much more than participating in a chat or a Blog — even this one. Women e-Patients may turn to discussion groups, chats, Blogs and other UGC to gather information before making a decision. They may also read books, talk to friends, their significant other, their doctors, and any number of other healthcare professionals. . In my opinion, this is where e-Patients differ from Health 2.0 users. It’s also what makes us hard to market to :-)