Guest Editorial: Health 2.0 - Is Pharma Stuck in a 1.0 World?

By Jane Sarasohn-Kahn, THINK-Health and
Health Populi blog

The Health 2.0 movement officially kicked off on Sept. 20, 2007, in San Francisco. That was the site of the first Health 2.0 conference, where about 500 people crammed into a hotel ballroom to hear how Web 2.0 tools are changing relationships in health care. The excitement and energy at the meeting were palpable as various health care stakeholders, Web developers, patient advocates and bloggers exchanged perspectives on leveraging new media in health care for the betterment of consumers/patients.

And pharma was barely represented among the stakeholders in the room.

Those of us who attended the meeting inferred: Pharma is, for the time being, stuck in Health 1.0.

What is Health 2.0?

To answer this, first consider Web 2.0. Tim O’Reilly, a guru in new media circles, defines it as:

The network as a platform, spanning all connected devices; Web 2.0 applications are those that make the most of the intrinsic advantages of that platform: delivering software as a continually updated service that gets better the more people use it, consuming and remixing data from multiple sources, including individual users, while providing their own data and services in a form that allows remixing by others, creating network effects through an "architecture of participation" and going beyond the page metaphor of Web 1.0 to deliver rich user experiences.

I have added emphasis to Tim’s definition because of the implications for health care. This is a platform for consumer engagement, of pull, not push. It is user-generated. Health 2.0 is a world where pharma cedes (some) control to consumers.

Think: Web 1.0 = Encyclopedia Brittanica; Web 2.0 = Wikipedia. In Internet speak, it’s syndication, not “stickiness.” Web 2.0 enables Health 2.0.

One of the co-founders of the Health 2.0 conference, Matthew Holt (who is also blogmeister at the influential Health Care Blog), says, “Health 2.0 leverages the technologies of Web 2.0, including search, wikis, blogs, video, online communities and mash-ups, to enable health care stakeholders – patients, providers, payers and all – to relate.” “Relate” can mean communicate, transact, pay for, diagnose, share, support, provide second opinions…anything that parties online want to do in health care.

Health 2.0 is already changing relationships between patients/consumers, physicians and the rest of the health care system….including pharma.

It’s about trust.

For consumers, Health 2.0 starts with search. The Internet is now the No. 1 choice among consumers for health information. Burst Media found that four out of five (78.1 percent) Americans turn to the Internet to gather health information. The Internet is relied upon more than health care professionals for family health information.

Beyond search are social media that are bonding consumers together with like interests. Blogs, “vlogs” (video logs such as those found on YouTube) and online communities are enabling consumers to engage in knowledge sharing. In health care communities, it’s all about collective intelligence. Nielsen BuzzMetrics asserts that more than 90 percent of consumers trust recommendations from other consumers. Similarly, Edelman found that people trust “other people like me” more than institutions.

Health 2.0 is happening now.

Eight out of 10 Americans know what "blog" means, according to Synovate. Almost half of American adults have visited blogs – some as often as daily. Jupiter Research estimates that more than 20 percent of American Internet users have created some sort of health-related content. Furthermore, Jupiter found that 34 percent of adult Internet users in the United States, or 54 million people, connected to content others created online about health issues in the past year.

Consider Yahoo! as an example of this phenomenon. As of today, Oct. 4, on Yahoo! alone you will find more than 400 groups talking about ADHD. There are 136 lupus groups and countless people sharing perspectives on hypertension, herpes, HIV and HPV (and that’s only the ‘h’s). If you look beyond the majors (Google, Yahoo! and MSN), you will find countless microhealth communities that do more than provide a place to chat under a disease-state umbrella.

Passion and PatientsLikeMe.

Look at PatientsLikeMe. The story here begins with a young man named Stephen Heywood who was diagnosed with Lou Gehrig’s disease (ALS) in 1998. His family began to manage Stephen’s care. This led them to search for the latest research and advice on ALS. In 2004, PatientsLikeMe was founded to bring together a community of patients, doctors and organizations with a mission: to empower people with ALS and those who care for them. While Stephen passed away in November, 2006, PatientsLikeMe is a powerful, positive legacy left for his peers and their families.

PatientsLikeMe offers useful tools that help patients take more control over their condition. Some 2,300 patients have shared their medical information and ongoing progress on the site. The amazing result: PatientsLikeMe now has the largest treatment and patient progress dataset on ALS available today, anywhere. Data points include medication dosage ranges, lengths of time on a treatment, reasons for discontinuation, symptom severity and other key measures on more than 1,300 treatments and 300 symptoms.

That’s more knowledge about ALS than any physician or drug company has at their fingertips. And that knowledge is in the hands of the patients. These patients can search a particular medication at a certain dose and check what fellow patients have experienced against their own experience. PatientsLikeMe has allowed people with ALS to learn from each other, make course corrections in treatment and enhance quality of living with ALS.

This is but one impressive example of a patient-driven community. There are many others, and more are being developed every month. These communities are usually driven by personal health challenges and the desire to share, support and empower.

The wisdom of crowds kicks in.

A database such as the one evolving at PatientsLikeMe illustrates the power of the wisdom of crowds, a concept that James Surowiecki wrote about in the book of the same name. The theory is that large groups of people are smarter than an elite few.

That’s what’s behind an emerging physician-only Health 2.0 venture called PeerClip. This is a private community open only to physicians, physician assistants and nurse practitioners. Users register on PeerClip and then have access to journal articles, blogs, podcasts and videos. Clinician-users can search and review the material on PeerClip and tag the items they find most useful. PeerClip then aggregates the tagged and highly rated sources. Thus, as more clinicians log on to PeerClip and research topics, they will find literature that their peers have found most useful and relevant. As in O’Reilly’s definition of Web 2.0 above, PeerClip’s results get better the more clinicians use it.

Another physician-only community exploiting the wisdom of crowds is Sermo. On this site, physicians post clinical observations and comment on each other’s posts. The business model is based on “information arbitrage,” where government agencies, commercial entities (which could be pharmaceutical companies) and financial services companies pay a subscription fee for access to the aggregated information for insights into epidemiology, best practices and other applications.

Is Pharma stuck in Health 1.0?

Consumers and physicians have begun to research, transact, share and work in the Health 2.0 environment. It’s also clear that the pharmaceutical industry is a latecomer to the arena.

Digitas Health offers some insights into the chasm between consumers and clinicians on one hand, and pharma on the other. The company has found that, even as pharmaceutical marketers use social media in their personal lives, they “leave their own online behaviors at the office door.” I interviewed Bruce Grant from Digitas about this dichotomy.

Grant explained that pharmaceutical marketers' conservative approach to incorporating social media into marketing campaigns is "not an unrealistic worry especially in the current climate of public opinion, legislative and regulatory scrutiny, and aggressive plaintiffs looking for class-action suits." However, Grant argues that pharmaceutical companies should see the opportunity in social media.

"We need to understand that we are in a dialogue with patients in which the patients hold much more influence than they have ever held before," Grant said. He offered this proviso: “Any industry that doesn't take notice of social media and understand it and adapt appropriately is in danger of becoming irrelevant to the ongoing discourse."

Consumers’ lack of trust in the pharmaceutical industry could already be marginalizing their relationships with pharma. Patients today have lower regard for content created by pharmaceutical companies than they do for information generated by advocacy groups, physicians and fellow consumers. A Kaiser Family Foundation report found that 18 percent of consumers "most of the time" trust what pharmaceutical companies say in their ads – a much smaller share than in 1997, when 33 percent said they could trust drug company ads "most of the time."

Getting to 2.0.

It is understandable that the pharmaceutical industry has been lagging in the adoption of social media. In the absence of FDA guidance in the area of social media, internal legal counsel has no doubt urged a go-slow approach. The two major sticking points here would be adverse event reporting and off-label promotions, where patients might ask questions about using a drug for purposes that haven’t been tested and approved. Nonetheless, pharma could take an approach to Health 2.0 that balances these concerns while engaging with social media.

Even though the FDA has not released guidelines on pharmaceutical Internet communications, the law firm Seyfarth Shaw has provided some counsel on received precedent in this area. The firm’s white paper “Connecting with Patients, Overcoming Uncertainty” addresses the challenges and opportunities for pharmaceutical companies that want to engage with consumers in the Health 2.0 era. The paper takes a sound risk-management approach to dealing with social media through the lenses of off-label promotion, adverse event reporting and fair balance requirements.

Jack Barrette, former head of Yahoo!’s health portal and now founder of WEGOHealth, an online consumer-generated health community, says, “Pharmaceutical marketers don’t need to retreat from social media and hide behind a wall of adverse event forms.” Pharma has built communities of physicians before to discuss products. Now pharma has the opportunity to do the same with consumer communities. It’s time for the industry to learn from the wisdom of crowds.





Jane Sarasohn-Kahn, MA, MHSA, is a health economist and founder of THINK-Health, a strategic health care consultancy. She also writes the blog Health Populi at www.healthpopuli.com.