Scott Shreve interviewed several of the panelists for the Health 2.0 conference prior to the event, and posted them on his Crossover Healthcare blog. Visit there for an overview of some of my thoughts on in the intersection of Health 2.0, information therapy, and patient-centered HIT.

A few closing thoughts on my reactions to the conference though… Susannah Fox certainly is right in her seven-word wisdom about going using the Web for health information, “Go online. Use common sense. Be skeptical.” Likewise, she was on point about the needs for Health 2.0, “Recruit doctors. Let e-patients lead. Go mobile.”

I am still playing with my seven-word summary, but it goes something like this, “Timely, tailored information. Integrate into care delivery.”

My biggest question for the Health 2.0 movement after the very stimulating and provocative event is, “Is Health 2.0 going to be a disruptive force that only works outside of the more traditional delivery system or can the creative, consumer-centered orientation of Health 2.0 be used to support and transform committed but frustrated clinicians?” We need to align incentives correctly if we are going to be successful with the latter.

What can I say, it was a great conference with lots of energy. There’s a more just-in-time review of events on my own blog for people to take a look at.

Josh will also post his experiences here. In the meantime, here’s a picture of him on one of the reactor panels.

Josh and I are in San Diego this week for the Health 2.0 Conference, and to interact with innovative California health care organizations. I think we are two of the few people in the U.S. that did not attend HIMSS last week. However, we are two of the few people in the U.S. who are attending Health 2.0.

The quote in the title was from my table at the “Unconference” which was facilitated by Enoch Choi, MD, from the Palo Alto Medical Foundation. It refers to the difference between web services offered by physician groups and what could be offered.

In the kinds of conferences I go to, attended mostly by medical professionals (and in many parts of my medical group itself), I typically feel like “year ahead of my time guy.” (This post from my blog, using a cute Apple commercial, I think illustrates the dilemma well). In this group, though, I feel like “year behind everyone else guy (person)” and that’s pressure that I like. The current state of the art of patient access to their care team(s) is one to one, and in the next step should be many to many. I gave the example of a patient electing to have a surgical procedure. What might be one of the first questions they would ask. How about, “Can I talk to other patients who have had this procedure? And who have had it performed by you?”

We had a discussion about creating change and where that might happen - from within the (medical) profession or outside of it. Keith Schorsch, the CEO of Seattle-based Trusera offered the idea of the “enlightened” provider. I asked if there was a registry where we could all sign up. I was kidding though, because in my (our) travels so far, I find that all physicians/providers are enlightened, when we support them in being so. And that comes from thinking about the patient at the center.

The Kaiser Permanente Effect

Something I noticed that I need to watch out for, more carefully than I did on day 1, is the impact of being in a room of innovators as a representative of a large medical group / health plan. I say “Kaiser Permanente” effect even though I am not a Kaiser Permanante employee, but the thought/idea that permeates an audience sometimes when I/we represent ourselves and our work is the one that goes something like, “Only Kaiser Permanente/Group Health can do that kind of innovation.” That statement can be taken two ways - it can mean, “We aren’t going to do anything innovative because we aren’t structured like that.” I think in this audience, my concern is that it can be taken as, “We don’t have the ability to overcome inertia outside of a Kaiser Permanente/Group Health system.”

I think the statement in general is incorrect, and that’s good news. As I sometimes say, I am going to spend the day watching myself and listening 51 % of the time. There are a lot of smart people here working very hard to stimulate improvement in the health care system we all use; they are thinking of innovation 24/7 and I want to help make their ideas count. And pick up some new ones along the way.

Speaking of Innovation

One of the reasons we are here is to visit and shadow providers at Sharp Health Care. As you can tell from the image above, they are a leader in health care and interested in providing patient-centered health information technology. Josh and I presented our work to the group and it was well received. We’ll be shadowing in one of their medical facilities in the next two days.

Legal and Policy Analysis: Personal Health Records: Why Many PHRs Threaten Privacy, World Privacy Forum

2008 Survey of Health Care Consumers, Deloitte Center for Health Solutions

Actually we do want access to our own health information. The title is a reference to three things:

1. Personal Health Records, why PHRs May Threaten Privacy, published by the World Privacy Forum.

I think this is less about not using a Personal Health Record (PHR) and more about understanding HIPAA, and its useful. The paper states clearly that the discussion is a different one for HIPAA-covered entities (such as Kaiser Permanente and Group Health). I would recommend that people review the information or at least the summary document to be familiar with what an organization can or can’t legally do with personal health information. I think that’s the key - even if an organization states it is not going to do something, there may be no legal protection if they change their mind.

So could a personal health record threaten privacy? Sure. Is it a reason not to use one? That’s a personal decision of benefits vs risks. I think it would be a challenging statement to say that these concerns should keep all Americans from having access to their own health information, and certainly the situation is different for HIPAA-covered entities, where there is both access and legal protections. I also think that we should not rely on information technology to create trust for us using software, or the system we have long been waiting for will never arrive.

2. Deloitte’s 2008 Survey of Health Care Consumers, published by the Deloitte Center for Health Solutions

This is a very well done representative survey sample of Americans with regard to health care with a focus on online access an alternative treatments. The conclusion is very clear: consumers want access to information created by themselves with their physicians, hospitals and health plans. And only 6 percent have this access. So, a huge discrepancy between what people want and what they are getting.

I keyed in on some very important statements, that buttress a fact from my travels, that “uninsured does not mean uninformed”:

The attitudes and preferences of the uninsured mirror those of the insured

Interest in online appointment scheduling, e-mail access, and online access to medical records and test results is equally high in the uninsured and insured groups.

There was a similar attempt at creating “personas” of the various consumer groups in this paper, much as we did here, for the stakeholders we are working with. I would say that the technique is less effective in this report because the personas aren’t based on standard terms and are likely to be forgotten. In the health system world, it seems easier to segment by known groups, like Gen X, Gen Y, baby boomer, or by insurance status or by care system.

One other item of note is that 60% of respondents state that they are on medications. That’s an impressive number, especially when I think about the power of the compounds that we prescribe today. Having access to one’s information is more than a convenience. I wrote about a real-life example that I encountered recently, on my blog.

3. Google. See for yourself. I think this ties together a lot of the ideas above. John Halamka makes some comments about HIPAA and the Google product based on his experience being on the Google Health Advisory board. I think patient-centeredness may become mainstream. Comments are welcome of course.