The Health 2.0 Blog

Prescription Drugs, Health 2.0 and the eDrugSearch.com Community - Cary Byrd

When we launched eDrugSearch.com in January 2007, we focused on the core mission of enabling consumers to safely search for low-cost drugs from Canadian and other international pharmacies. We have been successful in getting the word out and growing our site rapidly -- attracting more than five million searches in our first year. We've done this without advertising, relying on word of mouth.

In February, we expanded our mission in a big way -- with the launch of the eDrugSearch.com Community, a social network for prescription drug consumers.

Why a Social Network for Prescription Drug Consumers?

An estimated 150 million Americans sought health-related content and services on the Internet in 2007. According to a recent Harris poll, 71 percent of U.S. adults use the Web to search for health information -- a number that continues to rise. Millions of consumers are also purchasing prescriptions drugs, medical equipment, and other supplies online.

Prescription drug consumers, in particular, have shown significant interest in blogs, social networks and specialized search. They relish the opportunity to share their experiences, and often their frustrations, with one another.

According to a 2007 white paper by Cymfony and Envision Solutions, two trends have contributed to an increase in the volume and impact of the online dialogue.

1. Consumers are more assertive in their health decision making
2. There is an increase in public mistrust of the pharmaceutical industry

The white paper concludes:

Social media has enhanced the power of the assertive and informed consumer who has access to extensive health information. The public … regularly reads information featured on blogs, podcasts, online forums and other forms of social media. Social media has provided an outlet for a range of … drug industry critics to express their dissatisfaction… However, it has also created a new support network where patients share perspectives on their condition and treatment options.

In short, consumers are turning to one another, rather than relying exclusively on DTC advertising and rushed doctor's appointments, to learn about prescription drugs. We thought this was a sufficient rationale for starting a niche Health 2.0 community.

Wikipedia: Time to Pull the Plug

There are many good reasons to deplore Wikipedia, not the least of which is its authors’ cultish smuggery about the righteousness of their cause and the rightness of their content.

Of course there is also its internecine complexity of processes. The documentation tracing the petty bitchery about an entry is often longer than the entry that is produced. The international collectivist negotiation over matters of “fact” is beginning to remind me of the United Nations, but without the fancy New York headquarters.

A recent post by e-health blogger John Grohol left me steaming anew about the nature of the entire enterprise.

The piece details a series of exchanges between a Wikipedia editor and Gilles Frydman, head of the non-profit cancer support community ACOR. The issue was the collective’s refusal to permit links to health-related support groups.

The post includes only one side of the story, and that filtered through the articulate vitriol of Grohol. So I can’t vouch for the details of the exchange. But it is accurate that Wikipedia does not permit links to support groups. [See relevant policy excerpt at end of entry.] On reflection, this astonishes me:

1. Wikipedia is designed to harness the collective intelligence of many individuals, an example of the the classic web 2.0 “wisdom of the crowds.”

2. Online support forums are designed to harness the collective intelligence of many individuals, the classic web 2.0 “wisdom of the crowds.”

Wikipedia leverages the wisdom of the crowds one way. Online support forums do so another way. But Wikipedia won’t assign value to the other–in fact as a matter of policy it pointedly excludes it. Which is to say: The power of the many is a powerful force to disseminate knowledge–except when it’s not.

The hypocrisy is remarkable. To cite just one sad example: The Wikipedia entry on amyotrophic lateral sclerosis (Lou Gehrig/Stephen Hawking disease) is workmanlike. It includes references to mainstream groups like the ALS Foundation. It even includes, god help us, a link to that font of scientific dispassion, the Ride for Life.

The Wisdom of Patients - Social Media In Health Care

People -- citizens, patients, caregivers, "consumers" -- are early adopters of social media in health, compared to other industry stakeholders including providers, plans, payers, and suppliers such as pharmas and medical equipment companies.

This is but one of many findings in my report, The Wisdom of Patients, which was published yesterday by the California HealthCare Foundation.

The report covers the origins of social media in the morphing of Web 1.0 to 2.0; the current state of social media in health; business models, opportunities and obstacles; a glimpse into the fuzzy future of Health 2.0; and, profiles several of the most pioneering figures in health/social media including Amy Tenderich of DiabetesMine; Matthew Zachary of the I'm Too Young For This! Foundation; Jack Barrette, founder of WEGO Health and formerly with Yahoo! Health; Neal Sofian of Resolution Health; Dan Hoch, MD, of the Harvard Medical School; and, Ben Heywood, CEO of PatientsLikeMe.

Jane's Hot Points: So many people informed this report. I interviewed over 30 people to listen to a broad range of perspectives, and benefited from the peer review of people like Matthew Holt, Scott Shreeve, and Dmitriy Kruglyak. I thank them all. I am fortunate to have had the California HealthCare Foundation sponsor this research. They are a visionary organization that supports and celebrates new thinking in health, particular in the area of patient self-care and technology.

I look forward to learning from THCB readers' own perspectives on this topic. Please comment on this blog and we can have ongoing dialogue here on the present and future of social media in health.

- Jane Sarasohn Kahn

EDITOR'S NOTE: The CHCF.org web site seems to be down this morning. Hmmm. I wonder if there could be a connection. Such is the power of the mighty Jane Sarasohn-Kahn!

UPDATE: Aha! It seems to be back. Go take a look.

Medical Privacy: The Challenge of Behavioral Ad Targeting in Healthcare

The latest piece in the medical privacy jigsaw puzzle is online behavioral advertising.

Last week, the Federal Trade Commission (FTC) received comments from the Network Advertising Initiative NAI on the agency's proposed principles for OBA. As part of this filing, the NAI has published in draft its own approach to behavioral ad targeting in health, included in the Self-Regulatory Code of Conduct for Online Behavioral Advertising

Online behavioral advertising OBA is the process whereby the online consumer's search behavior is analyzed across multiple websites and then categorized for use in advertising online.

NAI's members are reputed to cover 95% of the online advertising market. NAI's membership includes 24/7 Real Media, Acerno, Advertising.com (an AOL company), AlmondNet, Atlas (a Microsoft company), BlueLithium (a Yahoo! Company), Doubleclick (a Google company), Media6degrees, Mindset Media, Revenue Science, Safecount, Specific Media, Tacoda (an AOL company), and Yahoo!. Furthermore, NAI is processing membership applications from Undertone Networks, Google and Microsoft.

Toward the end of the NAI's Code you will find a section called, "The need for common understanding by industry," in which the NAI lists the "minimum restricted and sensitive consumer segments" that online advertisers should avoid targeting.

Health 1.0h. . .Geez, This Is a Mess

Craig Stoltz is a web consultant working in the health 2.0 space. He has previously served as the health editor of the Washington Post and editorial director of Revolution Health. He blogs at Web 2.0 ... Oh really? We'd like to congratulate Craig for being named to Time's list of the top twenty five bloggers in the country this week.

A family member just had surgery, but don't worry, this isn't about that.

I want to share just one observation from the experience:  Between the decision to have surgery and the moment scalpel touched flesh, the patient's medical history was taken four times. None of these documents contains identical information.

Medical History 1. At the specialist's office, forms were filled out in the waiting room, then completed and annotated during the in-office consult. The primary care physician's record was not provided or asked for. We didn't have the records from previous episodes of the medical issue in question--this all came up suddenly, and. . .we couldn't find them.

But the hospital said they'd faxed the latest ER report, didn't they? Can't find it here.

Medical History 2. The day before surgery, a hospital prep nurse called and created a new medical history by phone. My wife was there, so she was able to correct and change some details. One of these details was. . .the correct name of the earlier diagnosis, at least as far as my wife could remember. I had it wrong the first time. My bad.

Fourth Annual Games for Health Conference 2008

May 8-9, 2008 :: Baltimore Convention Center

The Games for Health Conference offers a rich platform for learning, promotion, networking and business development for organizations interested in the intersection between games and health. Topics to be covered include exergaming, medical simulation, interactive messaging, health behavior change, medical informatics, physical therapy and game development.

More than 300 individuals from 100 organizations - academic institutions, government agencies and foundations - are expected to attend.

Also, a pre-conference event on May 7 will offer two workshops: Games Accessibility and Virtual Worlds & Health.

All conference participants will have the chance to interact and play with these games that are improving society.

Web site for registration: www.gamesforhealth.org

Registration is $395 for Thursday, May 8 & Friday, May 9 and the pre-conference workshops on Wednesday, May 7 are $99-$129.

An Invitation to DNANYC

The Board of Directors and Advisors of Navigencs invite you to join us for a series of seminars, panel discussions and other events dedicated to helping you thrive in this new world of truly individualized health and wellness.

DNANYC Presented by Navigenics
April 8th - 17th
76 Greene Street
New York, NY 10012
9am - 9pm
Bringing the power of genetics from the laboratory into your life.

RSVP@navigenics.com

Calendar of Events

Tuesday, April 8 :: The World of Personalized Genomics
David Agus, MD; Brook Byers; John Doerr; Gred Simon, MD, MPH; Dietrich Stephan, PhD
6:00pm - 7:00pm Cocktail Reception
7:00pm - 8:00pm Panel and Open Discussion

Wednesday, April 9 :: Industry Leadership Discussion on Personalized Medicine and Genomics
David Agus, MD; Raju Kucherlapati, PhD; Dietrich Stephan, PhD
Private Event

Wednesday, April 9 :: The Future of Personalized Medicine: How Genomic Advances are Driving a New Industry
David Agus, MD; Brook Byers; Raju Kucherlapati, PhD; Mark Kvamme; Andrew Schiff, MD; Dietrich Stephan, PhD
6:00pm - 7:00pm Cocktail Reception
7:00pm - 8:00pm Panel and Open Discussion

Thursday, April 10 :: Personalized Genomic Health: New Paradigms, New Industry
David Agus, MD; John Doerr; Steven Krein; Dean Ornish, MD
6:00pm - 7:00pm Cocktail Reception
7:00pm - 8:00pm Panel and Open Discussion

Friday, April 11 :: The New Age of Prevention: How Personalized Health and Wellness Can Improve Your Life
David Agus, MD; Stephanie Middleberg, RD; Dean Ornish, MD
10:00am - 12:00pm

Friday, April 11 :: Wine Tasting Reception
Heather Bauer, RD, CON
Private Event

Monday, April 14 :: The Practice of Medicine Meets the Promise of Genomics
Geoffery Ginsburg, MD, PhD; Elissa Levin, MS, CGC; Michael Nierenberg, MD; George H. Sack Jr., MD, PhD; Benjamin Safirstein, MD
6:00pm - 7:00pm Cocktail Reception
7:00pm - 8:00pm Panel and Open Discussion

Tuesday, April 15 :: Genomic Testing and Your Practice
Robin Bennett, MS, CGC; Elissa Levin, MS, CGC; Kelly Ormond, MS, CGC; Dietrich Stephan, PhD
Private Event

Tuesday, April 15 :: Genetics Symposium
Bob Green, MD; Pardis Sabeti, PhD; Dietrich Stephan, PhD; Jeffrey Trent, PhD
7:00pm - 8:00pm Cocktail Reception
8:00pm - 9:00pm Panel and Open Discussion

Wednesday, April 16 :: Personalized Medicine Ethics and Policy Luncheon
Private Event

Wednesday, April 16 :: Bringing Personalized Medicine to the Consumer in the Information Age
Minalkumar Patel, MD, MPH; Ryan Phelan; Jay Silverstein; Indu Subaiya, MD
6:30pm - 7:30pm Cocktail Reception
7:30pm - 9:00pm Panel and Open Discussion

Thursday, April 17 :: Exploring the Meaning of a "Genetically Healthy Lifestyle"
Fred DeVito; Howard Fillit, MD; James Heywood; Jennifer Kaye; Michael Nierenberg, MD
6:00pm - 7:00pm Cocktail Reception
7:00pm - 8:00pm Panel and Open Discussion

Calendar is subject to change.

Knowledge Like Clear, Clean Water: NHS' Sir Muir Gray on Health Care's Progress - Brian Klepper

Over the last year or so, I've written a lot about how health care information will become increasingly available to consumers and health care business, and how this access will drive new decision-support capabilities that will profoundly change how health care works, eliminating many of the problems that have placed health care in crisis. So imagine my delight when a colleague forwarded this quote.

Sir Muir Gray is Chief Knowledge Office of Britain's National Health Service. His wonderfully clear explanation of how health care knowledge will become guidance - that is, decision-support - makes a compelling case for the transformative power of Health 2.0.

Check it out.

The future is something we make, not something we discover. And the future is easy to make because as William Gibson has said, the future is here, it’s just not evenly distributed.

The second revolution took place in the latter part of the 20th Century. It was driven by science, making plastics, airplanes, televisions and innovation in chemical and mechanical technology in health care.

We’re in the middle of the third Healthcare revolution. The first was based on common sense, an empirical revolution; the health of nations was transformed by making observations and deductions from data and improving conditions based on those deductions. So now, for example, we take clean clear water for granted.

We have made amazing progress, but we have though not solved the following “magnificent 8″ problems:

· Errors and mistakes,
        - Poor quality healthcare,
        - Waste,
        - Unknowing variations in policy & practice,
        - Poor patient experience,
        - Overenthusiastic adoption of interventions of low value,
        - Failure to get new evidence into practice,
        - Failure to manage uncertainty.

More science and more money is not going to help these. I have reservations about putting more money into health services, because my experience is that this just makes people more obsessed with money.

The third revolution is different - everyone’s involved and it’s everywhere, it’s adaptable, it’s pervasive, it’s inclusive and convergent.

I’m very much inspired by Manuel Castell’s work: The Rise of the Network Society. The third industrial (and therefore, healthcare) revolution is driven by citizens, IT and knowledge. Professionals are by and large two decades off the zeitgeist and this is not restricted to healthcare, it’s seen across all professions.

Knowledge is the enemy of disease, the application of what we know will have a bigger impact than any drug or technology likely to be introduced in the next decade. I’m talking about three types of knowledge here Statistics, Evidence and Mistakes - we need to be able to deliver these as simply and abundantly as we deliver clean water.

We need to take pure research and systematically review it to produce guidance that goes into the “water supply” and then comes out of the tap. What we’re introducing in NHS bodies is a Chief Knowledge Officer - because you need energy to make knowledge appear everywhere.

So how might this come together? In the past we’ve given knowledge to clinicians who’ve then passed it on to patients, now our principles are that we give knowledge to patients and give them the opportunity to discuss it with clinicians. What is the best structure for financing and organising healthcare in 21C? - it doesn’t matter - you just have to decide how much to spend, how to allocate it and maximise use of resources. We should be thinking systems rather than structures, recognising the network that runs alongside every bureacracy is responsible for innovation.

And this will help us move from thinking about hospitals, trusts etc to thinking about our core business - the treatment of disease.

HEALTH 2.0 San Francisco

If you missed Health 2.0 San Diego last month or last year's sold-out Health 2.0 User-Generated Healthcare in San Francisco, here's your chance. Early bird passes for Health 2.0 San Francisco are now on sale. Buy your passes now and you'll save significantly over our regular rates.  Only 150 will be made available at this rate, so if you're seriously considering coming you probably should act now to secure a spot.  We'll be at the Marriott San Francisco downtown. The event will kick off on the evening of October 21st and run through the evening of the 23rd. 

We’re expecting an even larger crowd than last September - around a thousand - so Health 2.0 San Francisco 2008 promises to be the place to be if you're involved in this space, an investor or looking to connect with industry insiders. You'll get the low down on new Web 2.0 technologies like social networking, blogs, podcasts and specialized search as well as an overview of new healthcare and wellness tools and services. Speakers will include leaders from Google, Microsoft, WebMD, Sermo, Daily Strength, PatientsLikeMe, Organized Wisdom, Health Central and many more.

Here’s just a quick rundown of what you will see:

Plenary

• Keynote : The Future of Health 2.0
• Consumer Aggregators
• Specialized vertical search
• Consumer Tools
• Social Networks in Healthcare
• International Health 2.0
• Business Models in Health 2.0
• Investment trends in Health 2.0

Breakout Sessions

• Wellness 2.0
• Health 2.0 in Disease Management
• Virtual Visits and New Delivery Models
• Specialized vertical search: a deeper look
• Patient Social Networks
• Clinician Social Networks
• Provider Search and Rating
• Online Identity and Privacy
• Money & Administration in Health 2.0
• Health Plans 2.0
• Consumer Genomics
• Health 2.0 in Pharma and Pharmacy
• Open Source in Health 2.0
• Wikis & Collaborative Platforms
• Content, Navigation & Advocacy

Special Sessions

• In conversation with 3 Health 2.0 CEOs
• The Great American Health 2.0 Motorcycle Tour with David Kibbe
• The Health 2.0 Unconference
• Health 2.0 Accelerator

Early Bird Passes on Sale Now

The next Health 2.0 conference will be held in San Francisco, California from October 21st - 23rd at the San Francisco Marriott. The theme will be a return to the focus that made our first conference a resounding success: Web 2.0 technologies, healthcare and all points between. We’ll provide a sweeping overview of the things that are happening in this exciting area, covering everything from innovations in search, to healthcare focused social networks and consumer sites and the exciting trends in wellness and personalized medicine taking shape on the horizon.

Health 2.0 User-Generated Healthcare will be a much larger event than our previous conferences with nearly a thousand guests, appearances by the top names in technology and healthcare, and a lineup of carefully picked startups active in this area.

A limited block of early bird passes are now on sale. (If getting the best possible rate is important to you, you’ll want to act quickly. Early bird passes will be significantly less expensive than those purchased at the regular conference rate.) We're also taking applications from students and people involved with startups who would like to be considered for the limited block of reduced rate passes we'll be making available.

Health 2.0: Weighing In With a Reality Check - Michael Millenson

Maybe you saw the article: “Health 2.0 Helps, But Personal Contact Remains Top Weight Loss Strategy.”

OK. I made up the headline.  But the information comes from an article that provides food for thought for those of us who speak, blog and otherwise evangelize about the good things the Internet is bringing to health care. Here’s one question to start with: is there a different ethical obligation for those promoting the efficacy of an online health intervention than for those promoting a site to help you find a great hotel?

A Second Life on Second Life

In real life Alice Kreuger has severe multiple sclerosis and is unable to walk without the use of crutches. She rarely leaves her home except for trips to see her doctor. In the virtual world of Second Life she leads a radically different existence. Here, she is the avatar Gentle Heron, the co-founder of the Heron Sanctuary - a self-described "support community" for others facing similar situations. In this clip she takes us on an eye opening and moving tour of her world. The clip was among the most popular at Health 2.0.

Produced by our friends at Scribe

Interview with Jay Parkinson

A Doctor Grows in Brooklyn

Doctor Jay Parkinson became a minor media celebrity last year as word spread about his unconventional practice in Williamsburg, Brooklyn. Instead of maintaining a traditional office and paying support staff, Parkinson’s operation is entirely virtual and requires almost no overhead. (Unless you consider a Mac overhead.)  Using his apartment as a base, He runs a web site loaded with Web 2.0 touches that allows patients to communicate with him easily and explains his services in plain English.  After an initial in-person consultation, exchanges can be online and are conducted through either instant messaging or web chat.

“The healthcare industry is so stuck in 1994,”  he says, “The only way they’ve used the Internet is to provide information.  I look at the Internet as something that provides communication.”

The Myth of Health Care Consumerism - Brian Klepper

Last weekend I heard several great presentations at a meeting convened by Jeff Goldsmith, but one contained a point I hadn't heard nailed down before. Kaveh Safavi MD JD, from Thomson Healthcare's Center for Healthcare Improvement, detailed the results of several large sample surveys on consumers' attitudes toward web-based health care information.

One of Dr. Safavi's opening slides came from Solucient's HealthView Plus 2006 data, and was focused on "Quality-Driven Consumers," people who are "likely to research ratings information on hospitals or doctors," and likely to change providers if the one they originally preferred received a low rating. Strikingly contrary to the conventional wisdom, this group makes up only 19%, or one-fifth, of American adults.

The other categories are equally interesting. About one in eleven of us (9%) are "likely to research" but "unlikely to change." This group goes through the motions of investigation but won't switch when they find information counter to their original preference. 

One-third of us (34%) lackadaisically go with the flow. They are "unlikely to research" and "unlikely to change."

And (this is my favorite) nearly two in five of us (38%) are "unlikely to research" but "likely to change," traits one audience member suggested be renamed to "Ignorance On Fire.")

Assuming the trends described here hold up, these data have critical weight for the many health care organizations that are focused on consumer empowerment. If only 19% of America's 200 million adults engage to discover health care information that can be meaningful to their own circumstances, then that changes things considerably. 38 million or so people is still a big number, but it is a lot less than 200 million.

And that raises some questions. Will consumers use Personal Health Records? When they discover they have a particular condition, will most people dive into the available resources to become knowledgeable about it? Will the numbers described by the survey change as technology evolves and we evolve along with it? Is our broad resistance to pursuing information that is in our own interests a passing cultural phenomenon, or is it a steadfast part of the human condition?

The data go on to show that Quality-Driven Consumers are predominantly higher income, boomers, and Gen X adults. My guess is that education, a comfortable technology proficiency, and reasonably good personal management skills are common threads here.

But the subtext of this information is undoubtedly that the most important changes coming in health care will occur not only in the ways that consumers get and act on information, but in the ways that organizations - health care and non-health care businesses - do. Even though health care information can have serious utility for individuals, many of us simply don't appear to be built to chase and use it. Businesses are different though. Most are based on a discipline of following through, and they succeed or fail on their ability to use information effectively.

All of this re-enforces my belief that, while we're in a fascinating, rich early stage of Health 2.0, where many of the sites are focused on consumer empowerment, the bigger play will be for sites that, in an increasingly competitive and value-sensitive marketplace, create value by helping health care purchasers and vendors of all types make better, data-driven decisions.

This will become meaningful as it becomes more and more possible for businesses to buy coverage based on which health plan has the best performance record. Or as health plans really do try to assemble the most efficient (rather than simply the largest) provider network. Or as hospitals focus on identifying the best performing hip for their hip-replacement patients. Or as doctors determine to follow a condition-specific protocol that has a track record of consistently producing the best outcomes at the lowest costs.

Consumer-oriented applications are easier and cheaper to develop and bring to fruition than business-oriented, data-intensive ones. But the imperative to succeed in an intensifying marketplace could ultimately swing the pendulum toward Health 2.0 applications aimed at business. If and when it does, then the resulting transparency, decision-support and impact on market dynamics could drive many of tremendous changes in health care that we've all been looking for.

Getting the PHR privacy and Deborah Peel issue off my chest, by Matthew Holt

I’m a card carrying member of the ACLU. I oppose the Patriot Act. And I absolutely oppose the current Administration's decision to ignore the FISA law that already bends over backwards to help the government spy on Americans whom it suspects of criminal activity. I’m also appalled when I read stories like this one—in which the FBI has been illegally abusing its power by issuing “National Security letters” willy nilly.

I say all this because it’s now a couple of weeks since Google announced it health initiative and during that time we held the second Health 2.0 conference. And all the mainstream press can write about is the potential for privacy violations in online health sites, and PHRs, whether it’s been in the San Diego Union Tribune, ZDNET, USA Today or Modern Healthcare.

So even this balanced article in the Washington Post leads with Deborah Peel from Patient Privacy Rights and you have to wade through her incendiary rhetoric before you get to some sense from John Rother, while David Kibbe’s rational applauding of electronic health records only appears towards the end. Here’s what Peel says:

Many online PHR firms share information with data-mining companies, which then sell it to insurers and other interested parties, Peel said.

Well I’m still waiting to see the proof about this. Essentially she’s saying that consumers’ identifiable data is being sold and used against them, and so PHRs are bad.

Much data is of course sold in health care, but as far as I’m aware it’s all deidenitifed. Whether PHR companies are systematically selling data is unclear. Whether they are selling identifiable data (the thing HIPAA bans and everyone agrees is a bad idea) I severely doubt.

And the problem is that this type of allegation gets the conversation completely off track. The biggest problem with the US health care system and its use of technology is not privacy violations. It’s inefficient use of data causing harm (and costs and poor quality care).

I am getting more than a little annoyed with this focus on the wrong thing. As my commenter JD paraphrased in my earlier piece on the topic (5^th comment down here), do the Deborah Peels of the world not use bank accounts or credit cards? Do they not buy houses or have credit scores? Do they not know about what is already known about them in the real world? People understand this data flow and they accept it because it brings them a return that they value. And the same will be true for health information—if health information technology produces valuable results

So what are the nay-sayers going on about? Well I actually suffered and read the World Privacy Forum report on PHRs by Robert Gellman. It’s a hash of conjecture with its main complaint being that HIPAA doesn't explicitly cover PHRs. Well, no shit Sherlock. HIPAA passed in 1996. It was actually was prepared years earlier and it’s about the automated transactions that existed then. No one had heard of a PHR in 1995, so why should the law cover them? What will happen is that PHRs will start being provided by covered entities and will be under the aegis of HIPAA (in this country at least—it’s called the “World” privacy forum but in reading the report Gellman only has heard of one country apparently).

But even if PHRs are not covered by HIPAA, what are the terrible consequences? Well let’s see. I’ve taken a few excerpts from the report. In the first Gellman says:

Regardless of the PHR’s policy on marketing disclosures, advertising can provide a method for a consumer’s health information to escape into marketing files. Marketers already have millions of names of consumers categorized by specific diseases and diagnoses. Most of the information comes from consumers who provided it in response to “consumer surveys” or through other stealthy methods for collecting health information for marketing use. Health records maintained by health care providers have been unavailable to marketers directly, but commercial PHRs operated outside of HIPAA offer marketers the promise of more and better health information from consumers.

So the problem is not PHRs. It’s consumer surveys taken over the years by marketers. But let’s blame PHRs because they might potentially be used for the same thing.

But hang on, if I’m a transparent PHR vendor won’t I drive out the scummy guys who are secretly selling data which will be used to harm their customers? And aren’t Microsoft and Google and many others being transparent about that? Yes they are, and why won’t consumers vote with their data?

Six Health 2.0 firms reviewed by David Hamilton

Over at Venturebeat David Hamilton looks hard at 6 of his favorites from Health 2.0

Reaction to the Health 2.0 Spring Fling Conference, by Dan Kogan

(This submission from Dan Kogan the CEO of HealthWorldWeb was posted by me, Matthew Holt, but not edited at all, nor was it solicited! Honest!)

As soon as I left the Health 2.0 Conference, I knew I would be remembering panels, meetings, contacts both random and planned, excitement, creativity and the endless enthusiasm in the air. If there was anything to carry out of these intense few days it was the positive charge of energy that I still carry with me.

The fact that US Healthcare system is profoundly broken does not come as a surprise to anyone. Patients are not very well educated about health issues, insurance limits the choice for patients and forces doctors into conveyor-like processing rather than delivering the quality healthcare patients should be receiving. However, people who are involved in the many venues that have surfaced out of what Matthew Holt coined as “Health 2.0”, are pro-actively seeking changes.

The leitmotif of the conference was connecting consumers and providers. The format varied from the “Accelerator” track to demo and reaction panels, and perhaps the best aspect of the conference – endless hallway discussions, socializing and schmoozing.

With all the excitement generated by the field enthusiasts, overwhelmed entrepreneurs and cold-blooded VC’s; a few phrases stood out:

• These are the band aids over the broken system.
• We need a complete solution.
• We need data operability.

I’d like to comment on each of these:

Google Health Demo--yes it's a PHR, but that's not the important thing!

At 30.30 of Eric Schmidt’s talk at HIMSS Roni Zeigler gives a brief demo of Google Health.

The only thing it doesn’t show is the actual data transfer from the Cleveland Clinic and back—but there is data in there that has been transfered both ways (Cleveland Clinic data in Google, self-entered data from Google seen in the Clinic’s MyChart from Epic)

Of course those of you at the Health 2.0 Conference yesterday saw exactly that transfer from Microsoft Healthvault. Bill Reid from Microsoft asked Taylor Giles from Kryptiq to show their tool which moved data back and forth from information emailed from physician to patient (using Kryptik’s secure email) and allows the patient to email it to anyone.

Bill & Microsoft is at pains to explain that HeathVault is not a PHR. Missy Krasner from Google, who unfortunately wasn’t able to demo but kindly took a question from the floor, said that Google was fine calling theirs a PHR.

But what matters here is not what we call it. It’s what it does!

Two issues. One was brought up by a comment right at the end of Eric Schmidt’s talk (wind forward to the last minute) when a doctor said the obvious—if he could get the patients permission to access all this data, he’d save time, he’d save money and he’d provide better care.

The second is obvious and very important. With these new platforms for information (and here’s hoping that the existence of the platform forces organizations to allow consumers to port their data to it much as Quicken has done to banks) we can now do all kinds of interesting things to the data—which means doing all kinds of interesting things to out health. Obviously that includes personalizing search (well at least Google and Microsoft hope so as that’s the part of the service that they want to make money on), but it also potentially includes so much more. I am really interested in apps that are going to run on top of this, for which to this point people have not been able to include records, and have to had to self enter limited data. I see the tag line now:

“Bring your data from Google Health or HealthVault into our drug screener/health risk assessment checker/diagnosis tool/medical destination finder/doctor finder”. So let 100 applications bloom and may the best win.

So can the next reporter who calls me about this please ask about that, and not bother asking for my “concerns about privacy”. (OK I’ll talk to them about privacy too, and I’ll try to keep my temper).

Thanks to both Google and Microsoft for coming to the table. Now I hope the Google team can both get the production version up soon, and release those APIs ASAP!

The Spirit and Promise of Health 2.0: Empowering the Person, not the Patient, By Keith Schorsch, Founder & CEO, Trusera.com

Health 2.0 is about redefining the role of consumers in our health life. We are experiencing a sea change in consumer attitude, a growing understanding that we must be our own best advocate for personal and family health. We no longer live in a one-source world where we can rely solely upon a physician to inform our decisions about health. 

Men and women are flocking to the Internet in increasing numbers looking for health information. We want access to multiple points of view on conditions, treatments, exercise and nutrition to make better decisions about our health.  The vision of someone armed with the right information--with the power to make personal health decisions--is a compelling one.   But this vision cannot be achieved without addressing a central flaw in the current system - our focus on patients, rather than people. Online and offline, we are not fully acknowledged as multi-dimensional people who desire and pursue an active role in our health lives.

Some Health 2.0 Conference notes and catchups from the Scotts by Matthew Holt

Scott Mark wont be able to be here but he wants to follow along at home. He suggests anyone blogging try to use a community tag of "health2con" and that everyone subscribes to the tag on Technorati. Nice idea, Scott.

Another Scott—this one Scott Danielson who’s a film-maker trapped in the body of a health plan exec—has used his artistic and storytelling talents to put together a cool picture book/presentation called Health Transformation 2.0 (although we have to stop Scott calling it Healthcare 2.0 in the middle!). I’m big on using communication tools that work for those who don't like dense text (e.g. people not like me!) and that’s what Scott’s done a really nice job creating. In his words

Health Transformation 2.0 is a little booklet that provides us with a vision for how we, the early innovators of Health 2.0, can help consumers live healthier, connected lives. The book outlines a few ideas that could revolutionize the management of medical data, facilitate new relationships between caregivers and consumers, and lead to the creation of peer-to-peer platforms that truly empower all Americans to embark on a personal journey to wellness. At its most simple, it’s about better tools and better experiences. This little marvel of a book outlines the core elements that will make up the Healthcare operating system of the future.

I think he’ll have some copies available at the conference, but you can download it here.

Matthew Holt

Health 2.0 Conference -- the icyou videos

While we gear up for the conference on Monday and Tuesday, icyou has put all the September videos from the Health 2.0 San Francisco Conference up in one place!

Health 2.0 – Patient-oriented Health Care, by Dan Kogan

Dan Kogan is a veteran IT developer who built some matching systems now prevalent in financial institutions. He’s now turned his attention to healthcare and has started Health World Web. I (Matthew that is) have been advising him as he gets going, and have therefore (as I allways want good material) bullied him into writing about his view of why health care is ripe for this technology and a little about what his company plans to do. (Don’t forget that the same offer is open to anyone who wants to write on the Health 2.0 Blog)

When exactly did the power of healthcare move out of the hands of the people and into the hands of the doctors? Historically, patients do not take the upper hand when it comes to choosing the proper healthcare. Choosing the right doctor becomes a nerve wrecking game of cross referencing the insurance listings with yellow pages, the general listings of a Google search inquiry with proprietary knowledge or word of mouth. Finding a good doctor often reminds a patient of a game of dice. The chances of rolling two 6's are equal to 1/36 or about 3%. What comes into the equation is the patient’s insurance, the insurance a doctor will accept, the potential path to the specialist through the gatekeeper (if one is required), locale and then, just pure randomness in getting to one of the more than 700K licensed MDs.

With the rise of the Internet, at least the last part can be solved, or helped by the army of newly created sites whose only purpose and claim to fame is to put patients’ minds at ease, help them make the right choice, and have at least the minimum of assurance when it comes to the choice of a doctor, treatment or medical advice.

A very powerful “human” engine that is making waves at the beginning of the 21st century is called the Social Network. It has started with the arrival of LinkedIn, MySpace, Friendster and Facebook. Simple social communication made a leap into the multiple vertical domains of human knowledge. The trend of health related vertical social networks picked up over the last year.

The premise behind this so called Health 2.0 movement is simple. Patients are merely tired of not knowing the whos, whys, hows and what fors associated with the care they are receiving from their doctors. Patients have accepted diagnosis and treatment at face value for too long. The office process for healthcare has remained the same since the inception of organized healthcare. But what exactly does Health 2.0 offer to a patient? And what part do doctors play in this movement?

More on Google, Cleveland Clinic and the privacy zealots, by Matthew Holt

So Modern Healthcare's Joseph Conn has a whole page to write about the Cleveland Clinic and he writes just about HIPAA and the fact that this pilot is not going to be covered by it. Victoria Colliver in the SF Chron writes about not a lot more, but at least she has someone () stating the bleedingly bloody obvious—

"If it's made convenient enough and easy enough, people will be no more concerned about privacy with these systems than they are with their financial information," he said. "Far more people die because health information is not released or difficult to get ... than anybody's ever been harmed because the information has been inadvertently released."

OK so it was me she quoted, but someone needs to give Deborah Peel and whoever the hell the World Privacy Forum is a big shake. I say this as a card-carrying member of the ACLU and Amnesty International who is deeply concerned about anyone’s private information and what use is made of it.

And the shake is, if a government overhears your private information illegally (or quasi-legally) it can use that information to take away your freedom and worse. So the standard for their ability to access that information should be an awful lot higher than it is in virtually every country—including this one.

If a private corporation unwittingly lets slip your private health data, or even uses some aspect of it knowingly to target you for marketing, the chances of you suffering much from it are very, very low.

These are vastly different things, and conflating the two does not help in the least.

Furthermore, the potential for improvements in health outcomes and efficiency from the type of things Google Health, Microsoft and everyone else working in this business are trying to do vastly exceed any possible risks associated with this disclosure. The kind of language used by the privacy zealots besmirches the honor of the people at Google, Cleveland Clinic and many other places working very hard to fix these problems.

Furthermore the potential for harm from inadvertent disclosure would be even less if we had sensible insurance reform that prevented discrimination against people with certain health conditions. Of course that discrimination exists right now every day in America. It causes far, far more pain than any potential privacy violation. And I have not seen Deborah Peel in the paper complaining about it.

For that matter while Peel’s complaining about Google, and lots of other HIT vendors—without any good reason or evidence—she’s been publicly praising Microsoft without acknowledging any of the accusations Fred Trotter and others have been making about her basic technical understanding of Healthvault. Perhaps its about time she came clean on the economics of that relationship.

CODA: For the record—other than one or two employees of Google and Microsoft attending the Health 2.0 Conference in which I am a partner, and my doing a small amount of consulting with a contractor who was working for Microsoft in 2006, I have no financial relationship with any of these companies. Not that it would change what I thought.

Matthew Holt

Google to Store Patients' Health Records, by Matthew Holt

The AP has announced that Google's first step into the world of storing health records will be in conjunction with the Cleveland Clinic—which of course already has a boatload of patients using EMRs and PHRs on the Epic MyChart system. The idea (presumably as this is a leak from within Cleveland Clinic not an official announcement) is that those records can be stored in Google, and presumably will be transportable—somewhat similar to what Microsoft and Dossia are promising. Nothing earth-shattering yet, but an interesting beginning.

And of course we’ll hopefully get some more details next week at the HIMSS conference where Google CEO Eric Schmidt is speaking, and the Health team is having a party to which they kindly invited me (Thanks, Missy!)

Google has been much criticized for its slow pace in health. But speaking as one who now runs big components of our little business on Google via Checkout (and integrates it with rival services like WuFoo and TypePad) — I think that this (and HealthVault et al) is a small step towards a much bigger online future for health care transactions. At least, I hope so!

Interview with Roy Schoenberg, American Well by Matthew Holt

Ever since I saw Roy Schoenberg (of American Well)'s view of the future of patient to physician communication I've been waiting to bring it to you on THCB and the Health 2.0 Blog. And finally I was able to get him to tell me about it.

So first whip over to the American Well site and watch the video about how it works, and then come back here and listen to the podcast of the interview I did with Roy last week. (I'm afraid the levels are slightly problematic in a few places in the interview, but luckily Roy is louder than I am!)

In addition Roy will be giving an in-depth look at American Well in a sponsored "deep dive" expedition at the Health 2.0 Conference in March.

Matthew Holt

Matthew & Indu on the Digital Health Revolution

Fard Johnmar interviews Matthew Holt & Indu Subaiya on the Digital Health Revolution.

Health 2.0 Conference Social Network on CrowdVine

Now we’re gearing up for the conference in San Diego we’re hosting a social network for the attendees on CrowdVine. Please feel free to try it out and sign up.

Health 2.0 Conference Home

Some simple 2.0 Definitions by Matthew Holt

The Pew Trusts's e-patients blog (the one in honor of Tom Ferguson) has linked over to some very cool introductory videos to socal netowrking, blogs, wikis, & social bookmarking. About a minute each and great to explain these things to your grandma or CEO.

Here’s the post.

Matthew Holt

An early industry sponsored social network site by Matthew Holt

I've been getting bugged by the PR folks for an actually interesting looking interactive condition specific site. It's from a medical technology supplier called Cook Medical for men with with Peyronie's syndrome--excessive curvature of the penis.

I have no idea if this is a quasi-phantom syndrome (a la restless leg), whether there’s a real community to be coalesced around here, or whether this is just astro-turf. The site itself has lots of videos and a small discussion area, but doesn’t exactly look too 2.0, even while it has the constituent parts.

But the important part is that at least one company has decided that this is an important enough way to drive DTC that they’re willing to put this kind of thing up and label it Health 2.0. We’ll a) see whether it gets any traction and b) see whether it gets to the end result for Cook—more surgery that uses their repair graft product.

But don’t expect this to be last similar site you see.

Matthew Holt

eDrugSearch Blog interviews Indu & Matthew by Matthew Holt

edrugsearch.com has been interviewing a series of Health 2.0 observers in an email Q & A format. This time it's Indu & Matthew's turn. In their view we spent a lot of time discussing the companies to watch in 2008.

By the way eDrugSearch.com also does the, not too scientific but always fun, health care blogs Top 100. No conspiracy theories here, but have you noticed how the WSJ Health blog has sneaked about THCB only since Rupert Murdoch bought it?

Matthew Holt

Collective intelligence in AthenaHealth by Matthew Holt

Scott Shreeve has spent much of his career promoting open source as a way to harvest collective intelligence. But (irritated by a description from a knocker) he’s done a great job at defining one shining example of building a network that becomes more intelligent as more data (and nodes) get plugged into it. And that network is a private SaaS company, AthenaHealth.

It’s a great example of two of O’Reillys constituents of Web 2.0, especially the second one:

1. Services, not packaged software, with cost-effective scalability that get richer as more people use them
2. Control over unique, hard-to-recreate data sources that get richer as more people use them

Now of course that control over data is in a private network. And it’s not an open source project. but the point is AthenaHealth is using that business positioning to add features and gets more powerful as it adds more clients.

Matthew Holt

HealthCentral Network pulls in $50M by Matthew Holt

Having been told that there was no money for Health 2.0 companies unless there was a really clear business model, I was a little surprised to find that there are true believers in the investor community. On Friday HealthCentral Network got $50M in funding and looks like its going to be IAC’s (the owner of Ask, Match, Travelocity and many more) bet in health online.

David Hamilton at VentureWire is pretty down on HealthCentral’s chances. He says it just republishes other content. But I think its a pretty clever play—he misses its combination of community activists and experts. My understanding is that they’re on the way to 7 million visits a month—that’s not exactly WebMD territory, but it does give them a shot of being in a decent position when the smoke clears.

Of course the best way is to make up your own mind by seeing HealthCentral’s Bill Allman at the next Health 2.0 conference in San Diego

Carol aims to disrupt the health care market by Matthew Holt

One of the most interesting new Health 2.0 companies is Carol--a Minnesota start-up that is aiming at the heart of the health care system. It's trying to create "care packages" that will in the end (if it works) change how people buy care, and how providers organize to deliver it.

Ambitious and very interesting stuff. In one of the first interviews with Carol CEO Tony Miller since their launch last week, I asked him what the company was hoping to do and why he felt that they had a shot at changing the world! Here's the interview part 1 & part 2

Matthew Holt

Shawn Jenkins, CEO BenefitFocus interview by Matthew Holt

Last year I interviewed Shawn Jenkins, the CEO of BenefitFocus. This is a really interesting company, and most of you know it — if at all — from the partnership Health 2.0 has had with ICYou (headed by the wonderful Nina Sossamon-Pogue) which did all those great interviews at Health 2.0 (and made the wonderful DVD which is still available).

Sadly, the timing of the interview wasn’t great as I did it in late August 2007 got married a week later, and then dived into the conference. And as a consequence the transcript never got posted. Which is a real pity, as I just re-read it and it’s really interesting and one of the rare interviews in which the interviewer sounds like he knows what he’s talking about! Shawn, Nina and friends will be back at the next Health 2.0 conference showing various of their technology, but for now give this transcript a read to find out where they were 6 months ago.

Matthew Holt: This is Matthew Holt of the Heath Care Blog and I'm back with the podcast. And today, I have with me Shawn Jenkins. Shawn is the CEO of BenefitFocus.

Shawn, Good morning.

Matthew: How are you? And, where are you?

Shawn Jenkins: Good morning, Matthew. I'm fantastic today. I'm in beautiful Charleston, South Carolina, where it's nice and warm today. And it's great to talk with you. I really enjoyed your work and look forward to jam with you here today.

Matthew: Right, right. Well, I'm very interested about BenefitFocus, and I would suspect that what you guys have been building over the last few years is sort of the inside plumbing, for the connection between health plans and benefit professionals within employers, and probably elsewhere. And you're also doing some new stuff that I happen to know about, which is closer to some of these Health 2.0 that we have been investigating.

But, let's start at the beginning. For those who don't know who BenefitFocus are, what do you guys do and what's your core business?

Shawn: Absolutely. Well, BenefitFocus is, we're software development services company in the benefits area, but primarily health care is our focus. And a way to describe it, it's sort of the infrastructure, it's exactly what we have been working on and continue to do. Our BenefitFocus products such as e-enrollment, electronic enrollment, electronic billing, kind of this "the claim solutions". It's Web-based tools that health insurance companies and employers and their members use to, basically, take paper out of a pretty mundane process like signing up to your benefits or paying your bill and that's our technology. And we roll it out in different geographies based on the clients that we have.

Health 2.0 UPDATE

A special reminder for Health 2.0 Blog readers.

If you're considering signing up for Health 2.0 Connecting Consumers and Providers March 3 - 4 in San Diego, there is still time to sign up for a pass, although we are now very, very, very close to selling out. And a gentle reminder: if you've signed up - but have not yet actually completed the registration process - we cannot guarantee you a spot.

Why come to San Diego in March?  You'll see how Health 2.0 technologies are transforming healthcare in the doctors' office, in hospitals and impacting patient's lives. How are physicians and patients actually using those tools and communities?  What are their experiences?

How do they fit Health 2.0 into their lives? And for those who are new to Health 2.0: What works? What helps? And what doesn’t? In response to popular demand, we've added a second day with an expanded networking event - as well as an extended  "unconference" in keeping with the spirit of web 2.0 - based on one of our most popular features at Health 2.0 user-generated healthcare, where you'll be able to network and organize your own groups and presentations.

Of course, you'll also see rapid fire demos by a lineup including some of the hottest new start ups in healthcare and technology and get a chance to meet with the stars of the nascent Health 2.0 movement.

Data check by Craig Stoltz

Craig Stoltz is a web consultant working in the health 2.0 space. He has previously served as health editor for the Washington Post and editorial director of Revolution Health. He blogs at Web 2.0 ... Oh really?

New comScore data suggest that about 30 percent of women consider user-generated content on the web when making decisions about birth control methods. Twenty-three percent said they wouldn’t consider UGC, and 46 percent said they’d consider it but haven’t tried the chat/forum method.

The data make sense. With a whole new wave of birth control products on the market—including drugs that permit women to have menstrual periods monthly, quarterly, or even once per year (!)—women are checking with those who have been there/done that for some straight talk.

UGC can let sisters do it for themselves—at least with a new form of a product women have been using for years, and is heavily advertised with direct to consumers suggesting it’s a lifestyle choice rather than a medical decision.

Health 2.0 NorthEast mixer is tonight by Matthew Holt

So if you’re in Boston and want to find out more about Health 2.0 tonight, come to the Cambridge Marriottwhere the first Health 2.0 “local chapter” is having a networking mixer with speakers and panel. And yes I’m the speaker and Indu is one of the panelists.

The local chapter is the brainchild of VC Mark Modzelewski who has done a snappy job in putting this together in a short time. There are over 80 people signed up at the last count, but there’s probably room for a few more.

Here’s the site for more info and to sign up (there’s a small-ish fee to pay for the drinks & nibbles)

Matthew Holt

 

Call for Papers for Medicine 2.0 by Matthew Holt

Usually those academics are way late--often just starting the study of any trend in commercial health care after its over. But maybe not this time? The JIMR (Journal of Medical Internet Research) is gong to put out an edition about Web 2.0–-they’re calling it Medicine 2.0 which seems to be the other more academic side of the Health 2.0 coin. 

Here's the Call for Papers: Medicine 2.0.

JIMR is itself an open access free online journal.

Matthew Holt

Dyscoordinated: Healthcare’s Line Item Problem By Scott Shreeve

Many people in healthcare got their first look at Scott Shreeve through his work with Medsphere, the open source software company based on VistA, the information system developed by a team of programmers and doctors at the VA in the early 1970s. After a series of early successes that drew national attention, the project ran into problems when the founders clashed with management over how best to apply the open source model to the company's business. With that experience now safely in the rear view window behind him, Scott is back in the limelight with Crossover Healthcare, a new venture with a Health 2.0 focus.

In addition to doing a little Health 2.0 Experiment in my last post, I have to followup with the actual delivery and payment of the service as well. I am really focused now on these two areas, particularly as they relate to the creation of Health Plan 2.0. The simple outpatient procedure that my son had done, performed at a well respected surgery center, was instructive of how far we have to go and how much opportunity exists to redefine how health care is actually consumed.

First, I showed up at 6AM to sign in as a patient. Fortunately, my wife had called ahead of time (should have been able to do this online) to help provide some basic insurance information (should be able to do with a swipe of my personal identification). After signing in, we took a seat and were called up a minute later to review the billing information. The office manager happened to be checking in patients that day and she dove immediately into her shpeal about signing your obligation to pay, informing me that I was going to get multiple separate statements from multiple separate providers, and essentially wishing me the very best in trying to figure it all out.