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)

Tuesday, October 28, 2008

Stories in the Service of Making a Better Doctor

Doctor and Patient: Stories in the Service of Making a Better Doctor
Published: October 24, 2008, NYT
Narrative medicine employs short stories, poems and essays to build empathy in young doctors.

"...As part of the Accreditation Council for Graduate Medical Education’s Education Innovations Project, Dr. Panush and his faculty colleagues bring poetry, short stories and essays to rounds each day and discuss them in the context of the patients they see. These daily discussions, supplemented by offsite weekly conferences, form the core of the residents’ narrative medicine experience.
One year into the program, Dr. Panush and his colleagues looked at the effect of these daily discussions on the residents and their patients. What they found were significant improvements in patient evaluations of residents and patients’ health and quality of life, from hospital admission to discharge."

Marina: perhaps literature has a greater purpose, after all!

Tuesday, October 14, 2008

The Choices Patients Make

The Choices Patients Make

Published: October 9, 2008

"There are certain choices patients make that I have never understood, choices that from my perspective as a doctor seem to undermine their very chances for survival. Or at least undermine the efforts doctors, nurses and even complete strangers make on their behalf.


There is a taboo in our culture against a sick person, post-transplant or otherwise, being honest about how difficult it is to live with serious illness and to live on the verge of death,” Ms. Silverstein said. “These folks admit to feeling grateful and sad, joyous and angry, optimistic and defeated, all at the same time; yet only half of their emotions are acceptable in the public eye.”

I asked Ms. Silverstein about how she had dealt with such pressure.

“There is no question that I am eternally and profoundly grateful for life and for my good fortune in receiving a donor heart just in the nick of time,” she responded. “But my heart transplant life is a mixed bag, a miracle with a flip side: a wonderful, awful, amazing, terrible existence.”

Then she added, “I have not lived a well day since my surgery — not one — and this is a difficult truth to bear. And sometimes, on the very rare occasion, it wears me down to the point of wondering if the illness and struggle are worth it.”

Marina: Is it that health care practitioners don't want to know about the 'dark' side of treatment? The after effects? The constant pain? The struggle? Do they perceive that they've 'taken care of the problem', so move on?

Your thoughts?

Monday, October 13, 2008

Discussion: When physicians are ready to promote patient empowerment / engagement, what do we want them to do?

On October 8, Ted Eytan posted an antry on his blog, called: “When physicians are ready to promote patient empowerment / engagement, what do we want them to do?“.

In his writing he said, that “the majority of my writing here points to the idea that physicians are very interested in empowering patients, because they want to perform well for them.”

I couldn’t resist to write a reaction: “Although I’m convinced that was not your intention, this sounds very patronizing. I think it asks for a definition of patient empowerment. Please read my article on “Patient 2.0 Empowerment“.”

Ted then reacted with the question how I would phrase it. This was my answer: “Would you have written: “because they want to perform well for them in active cooperation with them” or something in that sense, it would have been much more towards what I think patient empowerment is all about.”

And since that moment a very interesting discussion started. The most exciting, in my view, outcome is that there will be a Society and Journal of Participatory Medicine.

Have a look at the complete discussion, it is definitely worth reading!

Lodewijk Bos

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