New system of care: A good day for kids!

Who says Friday the 13th is bad luck? For lots of people with chronic diseases and the doctors, nurses, parents and others who care for them, Friday the 13th of November, 2009, may go down as one of the luckiest days in a long, long time.

It was on this day the data was released at a scientific meeting showing that the health of those patients in a unique collaborative social network had improved dramatically. And it happened quickly, not the years it sometimes takes for innovation in medicine to make its way from idea to best practice.

Not to overuse the overused phrase, but this is a game changer. By harnessing the collective brain power, motivation, science and persistence of those who deal with chronic illness, ImproveCareNow is making a real difference.

In a packed ballroom, as darkness fell on this Friday the 13th, doctors from Cincinnati Children’s and other ImproveCareNow hospitals talked about their innovative way of practicing medicine, “stealing shamelessly and sharing seamlessly.”

Patrick Conway, MD, chief medical officer in the office of the Secretary of the Department of HHS was here. So was Anne Trontell, MD, program director at the federal Agency for Healthcare Research and Quality. They spoke of the work at Cincinnati Children’s as a “great example of what we’re trying to do” with health care reform. ImproveCareNow was called a “stellar example” of several ways the federal government would like to “change the outcome.”

Health reform has been in the news a lot this year. We’ve written about it a lot in this space. But what they’ve been talking about on Capitol Hill (just across the river from where this exciting news was released at the Gaylord National Resort and Conference Center on the Potomac) is really health insurance reform. We’re not complaining, of course. That’s long overdue, too.

But money is only a part of the equation. An important part. But just a part. What ImproveCareNow is all about is reforming the way medicine is practiced. Instead of doctors and patients operating in virtual silos, this brings them together. Instead of working in isolation and becoming frustrated because this or that doesn’t seem to be helping, a social network of doctors and patients opens up a whole new world of treatment options, ideas, outcomes, opinions and anecdotes.

The Improve Care Now Web site features a short film by Jesse Dylan

As we’ve proved here, kids get better, faster. Isn’t that what we all should be trying to do? Now granted, the information released at the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual Meeting and Post Graduate Course  today is all about Crohn’s Disease and ulcerative colitis. But there’s no reason the same kind of network, the same kind of systematic collection – and sharing – of data can’t be translated to other chronic conditions: asthma, diabetes, hypertension.

We don’t know if we’ll get the same kind of results – 20 percent increase in number of children in remission – but even if it’s only half that, aren’t we still making progress? And what if it’s twice that?

As Peter Margolis, a Cincinnati Children’s doc and director of Quality Improvement for ImproveCareNow, wrote in this blog a couple weeks ago, the system of providing chronic care is broken; progress is painfully slow. But it doesn’t have to be that way.

We’re excited about the future. It’s here today. And we’re leaving the black cats and broken mirrors of Friday the 13th in the dust.

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  1. Denise Walker January 04, 13:36
    I think this sounds wonderful. My daughter was diagnosed with Crohn's 4 years ago when she was 8 years old. Since then I am learning a lot. I have felt that if people with this disease could communicate with each other as to what has helped them, it might help others. Last December my daughter had her first hospital stay since she was diagnosed 4 years ago. I was pretty much in a panic. I started reading everything I could get my hands on. I discovered a book written by a doctor who did his residency at the Mayo Clinic and a nurse whose daughter has Crohn's disease. They have done a lot of research on probiotics and sugar. I asked my daughters gastro doc about probiotics and was told it was ok for my daughter to take them. I started her on Culturelle right away. One a day. It is now 1 year later, Jan, 4 2010. My daughter has never felt better since she has started taking Culturelle. She used to need Miralax almost every night . She has only needed it several times during the year. She did have a problem with her bowel movement not too long ago, but was under control once seen by the doctor with no flare up. I don't know if this is because of the culturelle or just a coincidence. She did stop taking the Culturelle for a few days on her own and realized she started feeling like she used to. Not so good. Of course she still has Crohn's and still has difficult times, but I am so thankful for the knowledge of the probiotic. It seems to have helped a lot. I tell everyone I meet who has these kind of issues. This looks like a great place where people and doctors can share this kind of information. Thank you.
    • Kate Setter
      Kate Setter January 06, 12:58
      Thank you for your thoughts, Denise. I'm glad to hear you've found something that helps your daughter. Information sharing is key.