Home Health 2.0 and The New Economics of Aggregation

Health 2.0 and The New Economics of Aggregation

Clay Shirky, author of Here Comes Everybody: The Power of Organizing without Organizations, considers Health 2.0 to be the new economics of aggregation – both information and people.

Speaking to a standing-room-only audience at the Health 2.0 Conference in San Francisco this morning, Shirky explained that in going forward, we must focus on three things: information, co-ordination and collaboration. The idea expands on his recent article Health Information Technology: A Few Years Of Magical Thinking? (with Carol Diamond), which warns the health care IT establishment against the dangers of “magical thinking.”

From Health Information Technology: A Few Years Of Magical Thinking:

“The challenge of thinking of IT as a tool to improve quality requires serious attention to transforming the U.S. health care system as a whole, rather than simply computerizing the current setup. Proponents of health IT must resist “magical thinking,” such as the notion that technology will transform our broken system, absent integrated work on policy or incentives.”

The problem, according to Shirky, is that we are overestimating the value of individuals accessing information, and underestimating groups collaborating.

“Patients in aggregate behave very differently than when solo,” Shirky explained today. “Think about what you do when you get a bad diagnosis – you fire up Google, find out who has what you have, and then talk to them. That ability, for patients to pool their resources, is a massive change to the health industry.”


“Back in 1974, when the Internet was a fraction of what it is now, the acorn to an oak, there were really only two applications,” said Shirky, “Telnet, and FTP. When electronic mail was introduced, it dwarfed Telnet and FTP by 75% within three months.”

This taught us something, Shirky told the audience, “The most valuable thing is not computers and machines; it’s people.”

“The classic mistake, when people start thinking about how data will affect field X, they tend to completely ignore group access to collaboration – and this is what is most important,” Shirky continued.

“While engineers are busy building technology and talking about building trust, they forget that trust is not about machines, it’s about people. And whenever people decide to trust one another, information will flow.” He pointed to Yahoo! Groups, which has in excess of 180K groups about health alone. “This scale indicates an enormous demand for this conversation. These people are using basic tools; they’re not waiting for technology. It’s about trust; humans are the trust networks, not technology.”


“The Voice of the Faithful launched in January 2002,” Shirky told us, “and started with 30 people. Today, they have in excess of 30 thousand members, spread over many countries – all recruited by other members.”

The Voice of the Faithful was formed when the community learned that church officials had tried to cover-up clergy sexual abuse.

“The Archdioceses in Massachusetts freaked out. He wanted to gag people, telling them ‘you can say anything to the person in the next pew, but you cannot talk to people in the next town,” said Shirky.

“They tried to subdivide the population, but this of course, didn’t work.”

People do talk, and mainstream Catholics started talking as never before; to each other and to the world.

“And when it comes to health, patient centric medicine is not just about ‘me, me, me’ anymore; the Internet has made it about me – and – everyone I’m talking to,” said Shirky.

While many argue that this type of system is too informal and shouldn’t be happening, Shirky pointed out that “you have to remember we’ve always had informal conversations, we’ve just never had this type of connection. And the majority of these conversations are brokered by fellow patients; not by working professionals.”


“Increasingly,” Shirky explained, “what is happening everywhere is the ability people have to collaborate.”

“In early 2008, Los Angeles surgeon Dr. Lawrence Dorr went to orthopedic joint manufacturer Zimmer and told them he’d noticed an alarming number of patients experiencing problems after routine hip replacements, who often needed a second operation,” Shirky told the audience. “Zimmer took a look at the device, said it was fine and blamed the doctor who in their opinion needed further training.”

Dorr didn’t like this answer. He went and posted a letter online. Patients started copying and pasting this document across the Web. It ended up as a public relations nightmare for Zimmer and led to the eventual suspension of the product by Zimmer Holdings.

“Institutions are trying to prevent 2.0 from happening,” Shirky said, but it isn’t working.

He pointed to a service called Medical Justice, which claims it is ‘relentlessly protecting physicians from frivolous lawsuits’ and offers among other things, a contract that doctors can have their patients sign which is supposed to prevent the physician from being defamed on the Internet.

“The problem of course, is that while you may be gagged by this contract, your friends are not.” Shirky concluded. “Much like Zimmer, they’re selling the fantasy – that patients are solo.”

What do you think? Should we continue focusing on the technology, or on the information and people?

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