David Sobel runs Kaiser Permanente Northern California’s attempts to provide patient information therapy — to him there are professional providers and lay providers of health care!

The opportunity is in self-care management.  Ought to be easy for Kaiser–as the incentives are in the right place– but there are "information implementation disorders".

• Noise overload disorder
• Professional dominance disorder (medical Hemianopsia — google it)
• Not invented here
• Disease specific syndrome
• Office visit tunnel syndrome (tyranny of doctor visits as a metric)
• Mindless body syndrome
• Technophobia

How to get around this? Need to go to the expensive places (chronic disease). Need to get cost-effectiveness data and compare it to other stuff that doesn’t demand data (no business case asked for office visits). Need to tell stories, such as the Healthwise handbook story about a guy who’s wife made him go in to get an arterial blockage taken care of instead of blowing off the pain. Saved an amputation and tens of thousands of dollars.

Need to rename, retrain, integrate Information therapy into everything the doctors do, and into physician continuing education. So KP doctors are asked when they are doing CME, What questions are available to KP members for information about disease XYZ?  But more than that they had to redesign the program about how to make physicians feel better by communicating better with their patients, and 4,000 docs have gone through the program on their own time because it works. Got to re-frame the language.

And of course relationships, champions, values, persistence and proving yourself matter — In other words don’t try to sell to Kaiser! (Oasis, Oceania, anyone else?)

Rushika Fernandopulle runs Renaissance Health, the attempt to set up a model small practice in Boston.

He thinks that despite he’s in a small practice, we need to think big, and we need to change what we’re doing.  We can’t manage the patients condition, because they do it mostly themselves. They’ve kludged together various IT systems. They ask their patients to pay $20-40 a month to keep their panel size down and their extra work (non-reimbursed) up. The most important thing they’ve done is to change the culture so that widget production is not the goal of the practice. They pay patients if they make them wait more than 15 minutes. And their practice works. He loves working there–his patients love coming.

But with that number of patients per docs we’d need 375,000 primary care docs in the US, and they we’d have to take $250 per patient per year away from somewhere else in the system to pay for it.  Worth thinking about though.

Still in Utah, still at the Information Therapy conference — A session on how to guide consumers to high quality content, that’s integrated with their care, electronically

Shorter Tom Lee (Calif HC Foundation): Standards for consumer data don’t really exist, but integration of all the technologies providers need without that consumer stuff is a bitch…and anyway the standards are being designed for providers. So this is tough.

Shorter Josh Seidman (Center for Information Therapy): PHRs are disconnected from EHR systems, and give data not information. Integrating a real EMR with a PHR with a content system is even more of a bitch. So getting the right info to the consumer when they need it is difficult.

Shorter Leslie Kelly Hall (St. Alphonsus Regional Medical Center, ID): Can we make looking at our info simpler without going to the level of granularity that providers or plans want? So lets not go to the level of complexity that’s more than we need. But there’s political leadership to do it now, which wasn’t there before.

Tom and Leslie agree with me that we need to change the business models to get there, and by the way CareEncentive may be doing that. (That was an interesting presentation, about how to get docs in Oklahoma to follow guidelines by paying them extra to answer questionnaires, and seeing cost reductions to boot). But Tom thinks that to save the day we need clinician organizations to step up and get the organizational, clincal process transformation done.

So it’s Fall in Park City, so here are some pictures of the view I’m getting.

Yes that is a weather balloon rising over the valley.

Meanwhile back to the conference. Roger Holstein just left WebMd after it was spun off from the newly titled Emdeon. His talk is making think we’re back in 1998, by the way he’s reading his talk, which is a little off from a major keynoter.  However, he’s a powerful guy with a strong track record and what he’s saying is right, although it’s preaching to the converted here.

As for the content. He started off saying that the Internet has changed the world. I think I heard the same thing back in the day 10 years ago about how amazing the Internet was and how it changed the world from Esther Dyson or Paul Saffo. Holstein is giving the "how great the Internet is now" (rather than the 1998 model of how great it was about to be) and how that the net will change healthcare, all put around the patient using technology.

This chart looks disturbingly like the original Healtheon chart from Jim Clark.

However, he thinks that benefit information as provided by payers is woefully inadequate. No shit, Sherlock.  He thinks that payers need to expose understandable payment data, and benefit data, as that will help payers get HRAs (health risk assessments, he means not health reimbursement accounts) plus claims to personalize a person’s health record. The reduction in FICA taxes alone on the money diverted to FSAs (flexible spending accounts) should justify the cost of creating that information on a portal (I’m not sure that I agree with him that it’s that cheap!)  But today’s tools are far from where the market needs to be.  He’s right; although I was selling a "good enough" tool in 2001!

Providers: we should be able to do comparisons the way we do car shopping online — including information about outcomes and costs. And hospitals should have costs and outcomes (and cost per outcome) information up on the web…he used an example from New York where he had colon surgery. NYU med center had a 5% mortality rate while Sloan Kettering’s was 2% and Sloan-Kettering was $20,000 cheaper (although Alain Enthoven points out that it hasn’t changed patient or physician behavior in NYC or in Pennsylvania). He believes that combining that information with information therapy (right information to patients in right manner at right time) will really change behaviors in the system.

He thinks that it’s "funny" that payers have trouble connecting with consumers despite the fact that they have their health information and their financial information about their health. They should put them together for members.

Provider information–Medicare should release public data about hospitals and providers. And it should really show quality at a useful level that consumers want –to make sure this doesn’t fall under the control of big health plans. In addition consumers want much better information about providers(including physician specific severity-adjusted outcomes), who have a terrible information distribution track record. We should also allow consumers and physicians the ability to compare their care to national standards.

If the health care organizations spent more time sharing their data, then we’d get much better information about what works and what doesn’t, for example in off-label use of chemotherapy. But in oncology the information about staging, diagnosis, and drug use is already submitted on the medical claim if only payers would share that data de-identified, we could really advance this science very quickly.

I asked Holstein why it took so long for this information to get to where it is today. He says that it’s employers who are driving this and now finally health plans are following along. If you build it can you make them come? Maybe not, but if they do come change is tremendous. He says it’s happening now.

What about getting the data right for doctors, who say that the data’s always wrong?  He suggests that if you give the consumers access to the data they will self correct it, so then the data reported back to the docs from the health plan will be more accurate.

Interesting stuff, but I need to hear more about incentives and/or regulation….

So the Information Therapy, largely driven by Molly Mettler and Don Kemper from Healthwise, is the concept that if you put the right information in the right place and to the right person at the right time, then it can be transformative in health care, and health care can make money off it.

In order to get us jazzed about making money Molly gave 20 lucky winners who found chocolates under their seat a lottery ticket from the store in Boise, ID that has sold two multi-million dollar winning lottery tickets. I won $1.

The first speaker was Susan Sheridan, chair of the Patients, Patient Safety Program from the WHO — A "consumer" who’s baby was rendered with cerebral palsy and husband was killed by two separate medical errors. Her first baby was visually assessed and noted to be yellow, but no one did anything else other than to give them a pamphlet about jaundice, but never said that it would cause brain damage or that she could ask for a test. 36 hours later after being told not to worry about it, he eventually was diagnosed with massive jaundice, which led to brain damage and the condition, kernicterus.

Her husband had a tumor, and they were told that the cells were typical.  6 months later it got worse–and eventually went into the spinal cord. Of course the test said "atypical", but they never saw that until that until after he died and she got the chart.

In neither case was the mistake revealed to them. She thinks that the most damaging problem for patients is the lack of disclosure (she didn’t say cover-up, but that’s what it is). She set up an organization called PICK, and browbeat the CDC, JACHO, AHQR, and a bunch of other agencies to issue alerts and tell hospitals to make the bilirubin test for excessive jaundice. But it’s still happening, and there are not yet universal screens for this. New guidelines from the American Academy of Pediatrics were re-issued, and they are producing films via hospitals and March of Dimes. HCA and other hospitals are working on it.

There’s now a campaign called What’s your baby’s Billi? and you can buy a wristband.  Give one out at a baby shower, and raise awareness.  My guess is that at $1 a bilirubin test (same blood as the PKU test that’s done anyway) its about $3m a year, which is probably a quarter the cost of a lifetime care for the average patient.

This is a partnership  organization driven by a really determined person. But there still isn’t universal screening in hospitals even though there have obviously been lawsuits, and there’s tons of information. It sounds like a no-brainer, but it seems to be a typical story of the system not reacting–even when it can be easily done

I asked about the litigation she was involved in. Usually in order to get the money, plaintiffs have to sign gag clauses. Litigation now is being seen as a high-dollar issue for lawyers. Susan went to trial to avoid the gag order. But she wants the gag orders abolished–because of the gag orders, no one knew about this. But clearly this is a damn expensive game of Russian roulette for hospitals that are not routinely doing the bilirubin test, and providers who don’t put the patient information out there showing them the true level of risk.

But the good news is that one person can change the world, one baby at a time.