John Moore in his post Health 2.0: A lot of Hot Air in This Balloon pointed out that

“Most of the companies on display at Health 2.0 will not be with us in 3 years time. There are simply too many companies with too little differentiation, chasing too few dollars with faulty business plans. The market is not yet at a state of maturity that will lead to broad adoption, consumers are simply not that engaged, yet.”

From all that I read, my impression is that this conference was industry oriented. And the innovation and new developments of that industry are mostly aimed at medical professionals to make life easier for them, more efficient. But I am not sure whether there were many MDs present at the event and according to John Moore,

“The majority of clinicians, a trusted source of information and advice for consumers perceived most Health 2.0 apps with a jaundiced eye as well.”

Or, as Dr. Gwenn put it: “Health 2.0 is for ALL docs, not just techies and social media junkies“. Preparing herself for the Boston event, she sums up a few reasons why doctors are not embracing health 2.0. To come to the conclusion that education is the solution. For doctors, yes, but also for patients? “Healhwise makes me nervous. I would want a doc talk in there,too. Too much burden on PT.” I wonder if she really gets the concept of information on prescription.

As I mentioned before, I did not attend the event. But I would have loved to watch the discussion with Don Kemper for if there is anybody who really put things to work and who really made the first steps on the path we now call participatory health, health 2.0 or whatever you want to name it, it was and is Don Kemper. He was one of the first to see that the supply of valid and trustworthy information is essential for patient empowerment.
It was interesting to see the report of that discussion at Healthcare IT News. According to Jack Beaudoin, during that discussion Matthew Holt was defending health 2.0, saying that the

“2.0 movement harnessed technology to enable patients to play a greater, more participatory role in their own care. The collective wisdom of self-interested patients, he argued, could lead to better outcomes than the professionally trained medical provider. “Ladies and gentlemen,” Holt said at one point, “we are the experts“.”

The first question is, who are “we”? The “legion of tech-physicians in the audience” as Beaudoin called them? And even if he did mean we as in “us, the patients”, with his statement Holt gave Don all the credits.

It’s my impression that with wisdom Holt means “experience”. But wisdom is more than just experience: “accumulated philosophic or scientific learning” according to the Webster or: “various combinations of the following: knowledge, understanding, experience, discretion, and intuitive understanding“, according to Wikipedia. To transform experience into true knowledge and wisdom, information is essential.
When you look at the history of what we call “expert patients”, which started in the 1980’s in the US HIV community, it is characterised by the fact that patients came up with bits of information (very often scientific studies) that their doctors did not know of, thereby opening new alternative ways in their treatment. And apparently that’s still the case, as ePatient Dave recently showed in his blog post on Elyse Chapman.

Which brings me to Dave.

“Dave stayed up on the balcony, microphone in hand, and spoke to the entire audience below. It was a perfect moment at a perfect time for me (and I think for the rest of the room), when a room of health care leaders looked up to our patients, physically as well as emotionally.”
“We Will All be Patients Someday” – Health 2.0 meets Information Therapy, Boston, MA, Ted Eytan, MD

Eytan even added a tweet from Susan Carr: “Was it @modulist who noted @epatientdave looked like the Pope presiding from balcony?”
Poor Dave, I think that was the last he wanted to become, beatified by “tech-physicians” and “health care leaders“. No disrespect to Dave, on the contrary, but it amazes me how intensely we focus on single cases and “glorify” them. Whether it is Dave or someone like Maarten in The Netherlands (@Dutchcowboy on Twitter), they indeed are examples of what an empowered patient is and should be, but they are exceptionally rare animals.
When I watched the errors being made during my cancer process I have continuously been grateful for the fact that I have my current background and was able to take action against those errors. But 99% of patients are not able to do that. Why not? Because they lack information, information necessary to notice errors, information necessary not to be overwhelmed by white coats and unintelligible verbal flooding.

Information is crucial and should be made available as broadly as possible, if possible in a trustworthy way (Ix). Scott Shreeve wrote that health 2.0 was happening “at the margins, outside the traditionally paternalistic medical-industrial system“. Really? ProjectHealthDesign’s Lygeia Ricciardi quotes one of the presenters:

“you have to deliver to patients only information that is relevant to them, and do so in a way that also makes sense to doctors–both from a clinical and a workflow perspective.”

This is both paternalistic and provider-oriented. It reminded me of what I said at the 2008 ICMCC Event:

“Patient centric is the buzzword for everybody who has something to say about the future of health and care. Care givers, industry, government, insurance companies, they all tell each other that they put the patient in the centre. However, the true power of decision is still in their hands. When and how are we going to achieve true patient centric care with the patient at least partly in the driving seat? Essential is the question I have often asked in the past; how are we going to inform the patient?”
Lodewijk Bos, ICMCC Event 2008

“The social, societal and ethical implications of the use of computing and networking” is the definition of the word compunetics I introduced 5 years ago, years before health 2.0 came to life. And, inherent to its definition, it has the patient as focus.

I expected health 2.0 to put that “focus on the patient” to work, helping the patient to get to the driver seat and become an active participant in his/her health path. But is it really? To achieve this we should start to concentrate on awareness. Make all stakeholders, but above all patients and providers, aware about the changing paradigms in health and care.
“Consumers are simply not that engaged, yet“, John Moore remarked. Because we have not told them yet how to get engaged or even what to get engaged about.

“Probably the most frustrating aspect of the Health 2.0 event [...] is a lack of transparency on the part of these Health 2.0 vendors to tell the audience how they are growing, where they are seeing traction and why we should even care.  Please folks, you want someone to remember you?  Give them numbers that substantiate your reason for existance.”
Too Many Content Plays = Unsustainable, John Moore, Chilmark Research

My frustration is that I don’t know how much industry listens to the wishes of the patient, nor how much the patient is going to benefit.

And just a minor note to put things back into perspective. This is an anonymous comment to Brian Klepper’s report on the Health 2.0 conference:

“Speaking of e patient Dave and rapidly evolving Health 2.0, see John Halamka’s blog (www.geekdoctor.blogspot.com) April 17 entry for how Dave’s experience has changed the way his (and all BIDMC patients’) medical information will now be entered into Google Health. This is rapid evolution indeed.”

Dave already wrote about it on April 1, so I am not so sure if all this would have happened so “quickly” – if at all – had The Boston Globe not gone public with it. Luckily the Boston Globe listened.

It seems I have enough material to consider for my invited speech at the upcoming European WHCC Conference in Brussels.

Lodewijk Bos

29 April 2009 | Categories: Blog.
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