TECH/CONSUMERS: Information Therapy, and a patient changing the world one baby at a time

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. Imgp4552

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.

CalThis 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.

2 replies »

  1. Matt,
    Thanks for the comments on behalf of PICK, parents, and children that suffer from this devestaing disability. I like Sharon am a parent of a child with Kernicterus. It is horrible to see the frustration and pain that any child has to go through, never mind one that is preventable. With your help and others through the media we as PICK parents slowly accomplish our goals everyday with your support. Thanks again..
    Sean Kingsley and family

  2. Matt,
    Thanks so much for posting this. My wife and I both work in the healthcare field and have three kids, but never knew about this. We know three women who are pregnant right now, and will insist they have the test.