Thursday, October 30, 2008

Unfortunately I have not been able to attend the Healt2.0 Conference in San Francisco. However I was able to get a good grasp of it. I published a lot of the output on the ICMCC Newspage and you can still read most of the reactions on Twitter: here and here.

During my observations there were 3 stages of surprise.

The first one was when I looked at wrap ups about the conference:

"With the explosion of healthcare information technology companies providing tools and resources for consumers, finding a business model to enable Health 2.0 to flourish is the market's next big question, said the moderator of a Health 2.0 Conference panel this week."
(Patty Enrado, Health 2.0 Conference: The business case is real, HealthCare IT News)
"This market and the players within need scale. Virtually all of them are small operations with less than 25 employees. Most that I spoke to are still very much in start-up mode, fleshing out the product and only now begining to think about how they will take the product to market and scale. Channel strategies are immature, messaging non-existent. A lot of promise shown with regards to technology, despite all the overlap, but we are far from seeing this market truly succeed as technology is only a small piece of what it takes to make a business successful."
(John Moore, Health 2.0 Wrap-up, Chilmark Research)

From the outside it really looked as if companies were the central focus.

The next surprise was this sentence in another wrap up:

"This post will share just a few of the many highlights from the event which we found particularly relevant to HIV/AIDS service providers."
(Highlights from Health 2.0: User-Generated Healthcare 2008, AIDS.Gov. blog)

Apparently, the community that more or less gave birth to the concept of the "expert patient" commented about the conference solely from a provider's point of view.

And then I remembered my reaction to one of the tweets from the conference:

"People want privacy, and they want convenience."
(twitter quote)

That reaction was, "sais who?". It sounds like His Master's Voice.

I haven't been there, I only saw comments and wrap ups. However, I was missing something. At the outside I did not hear the patient's voice. It seemed to be about the patient, not with the patient.

Apparently I have not been the only one:

"Others complained to me that there were no patients. A fair criticism, although our spring fling in March included 4 actual patients sharing their experiences throughout the day, and most of the speakers and demoers relayed great stories or information about their users. And of course Edelman was able to show its new data about patients an their engagement. Still others wanted more about physicians or more about policy."
(Matthew Holt, Some more reflections on Health 2.0, The Health Care Blog)

I rest my case....

Health 2.0 is about participatory health which means:

"the combination of health data and health information with (patient) experience through the use of ICT, enabling the citizen to become an active and responsible partner in his own health and care pathway."
(Lodewijk Bos, Health 2.0: Definition, ICMCC Blog)

As the song goes, it takes two to tango, although it seems that Clay Shirky has a different opinion. He has been quoted as saying:

"Patients in aggregate behave very differently than when solo" and "That ability, for patients to pool their resources, is a massive change to the health industry"
(Lidija Davis, Health 2.0 and The New Economics of Aggregation, ReadWriteWeb)

This deserves a separate entry, once the full text (or recording) of his speech is published.

One of the participants wrote to me in a private mail:

"The voice of the patient was amazingly absent. And there were precious few of us talking about delivering services because patients want them."

Which confirms the key question Carlos Rizo asked in one of his tweets:

"Unsure how much patients are involved in the design of all these Health 2.0 systems"
(twitter quote)

So, where was the patient's voice?

Lodewijk Bos
(also published on the ICMCC Blog)

1 comment:

Susannah Fox said...

I have heard from some conference organizers that it is a challenge to identify patients who are ready & willing to share their stories in a public setting.

I recently attended the Connected Health symposium in Boston, which included a presentation by e-patient Dave and his doctor, Danny Sands, which was an excellent example of including a patient's perspective.

The California HealthCare Foundation's Chronic Disease Conference in San Francisco was even more ambitious -- they not only had a keynote session with patient speakers, but included patients on other panels along with the professionals. Anyone who wants to include patient voices should talk to Caron Lee of CHCF about how she did it.

Books on Doctors as Patients and a few on the Doctor-Patient Relationship