Collective Wisdom to Improve Health and Health Care

Posted on 28 August 2012 by Peter Margolis

ImproveCareNow and the Collaborative Chronic Care Network (C3N) project

We all know the current system of chronic illness care isn’t working. It’s not working for kids with diseases like Crohn’s disease and ulcerative colitis; like Bianca (not her real name) that experience a lot of pain. But pain is the least of Bianca’s worries. Without optimal treatment, she’ll likely have stunted growth, possible arthritis, and a significant risk of surgery. And many normal childhood events like sleepovers or birthday parties….. a real stress.

The system is also not working for Dr. Sandy Roan (also not her real name), Bianca’s doctor. Dr. Roan has a variety of treatment options, but the “best evidence,” the evidence that results from randomized trials, can’t provide information on what will work best for a particular individual.

It’s also not working for Bianca’s mom, Anna, because the care delivery model doesn’t make it easy for her participate in Bianca’s care. She is wondering about trying diet modifications to see how best to control Bianca’s symptoms. She keeps an eye on what’s going on but feels the doctor’s role is to come up with solutions. She doesn’t really see the collaborative possibilities.

Finally, it’s not working for Dr. Vincent Kapoor (not a real name). He’s a researcher interested in improving IBD care but he’s faced with small unrepresentative data sets, and a lack of easy and productive ways to share data and increase the impact and reach of his research.

The Institute of Medicine’s “learning healthcare systems” model provides an exciting vision in which patients, clinicians and researchers work together to choose care based on best evidence; together they drive discovery as natural outgrowth of patient care; and ensure innovation, quality, safety and value, all in real-time. But so far, neither patients, nor doctors, nor researchers have easy access to such system.

Collective wisdom

What if we could harness the collective intelligence of patients, clinicians and researchers to create such a system? Think of Wikipedia, or, in science, how open, rapid sharing of data in advance of publication in the human genome project accelerated the sequencing years ahead of schedule. These are examples of how the production of knowledge, information, and know-how can be distributed over large groups of people. Yochai Benkler, of Harvard, calls this form of production network-based or “social” production.

http://www.ted.com/talks/yochai_benkler_on_the_new_open_source_economics.html

Network based production is suited to complex systems like health care, precisely because the necessary knowledge, skills and tools are often beyond the capacity of one place, one person, or one organization; because the stakeholders in the process, patients, clinicians and researchers, are motivated and have skills that can be devoted to the task; and finally because the scientific questions about how to accomplish improvements in health and health care, require a multidisciplinary complex systems science perspective.

With combined support from the NIH transformative research program, a US Agency for Health Care Research and Quality Enhanced Registries grant and 38 ImproveCareNow Network care centers; a team of patients, families, clinicians and researchers are working together to create what we call a collaborative chronic care network or C3N. A C3N is a network-based production system for health and health care.

Does this sound like an outlandish idea? It’s not; it’s actually already taking place. In the ImproveCareNow Network pediatric gastroenterologists are working together to share their collective wisdom and know-how to continuously improve the care and outcomes of children and adolescents with Crohn’s disease and ulcerative colitis. The percent of patients in remission has risen and been sustained without the introduction of new medications.

How did ImproveCareNow do it? SHARING – sharing data, sharing knowledge, sharing know-how, and sharing work. Every ImproveCareNow center pools their data, compares outcomes, standardizes care and learns from one another about how to get better results. An article in this month’s New Yorker, by Atul Gawande describes how standardizing and making care more reliable can make medicine more effective and lower cost. http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande

The C3N project is collaborating with the ImproveCareNow Network to take our work to the next level; redesigning an existing clinician-centric network into one that involves everyone – patients, families, clinicians and researchers.

How do you create a network based production system for health and health care? In my next post, I’ll write about the three ways in which patients, families, clinicians and researchers are co-designing this new system.

In the meantime, you can learn more about the ImproveCareNow Network at https://improvecarenow.org; the C3N Project at https://c3nproject.org, and listen to the talk delivered at the Patient-Centered Outcomes Research Institute, which forms the basis for this post: http://youtu.be/FxYbSEXWzhU

You’re Making Me Crazy

Posted on 28 August 2012 by jendavid91

Unfortunately, I can remember it like it was yesterday.

I was at the hospital – again. Missing school – again. In pain – again. And had just been told I was fine – again. And somewhere in between beginning to cry and trying to re-explain what was going on, the thought occurred to me, am I crazy?

They call it the ‘med student syndrome’, but let me tell you, this is particularly contagious in the world of Psychology as well. In fact, a good friend of mine is convinced she has every disorder the professor lectures about until I talk her down from her multiple psychopathologic diagnoses. But I was beginning to feel the same way – I knew I was sick, I knew something was terribly wrong, but the doctors didn’t and they were content with sending me home. So again, I asked myself, am I totally off-the-wall-in-need-of-serious-medication crazy?

If living with IBD were a job, that might be one thing. If I could spend all of my time and energy and resources on feeling well and resting and recovering, hey, it might just work. But then there’s that thing called life – with classes and homework and friends and responsibilities and jobs and you name it. Most of my friends living with IBD have their plates piled insanely high with activities, and their reason is that there isn’t a moment to lose. But there’s something to be said for deep breathing and going to bed early and sleeping in. Because when you’re running neck and neck with the road runner and your bowels are misbehaving, it can take of all your energy to get through a minute without thinking about your dysfunctional immune system.

How does one ‘keep on keeping on’? Short answer: I have no sweet clue. But this is what I do know about the exhaustive mental fatigue that belabors any IBD patient: sometimes, you need to check out and put your head down and call it a day. Don’t throw in the towel, just turn out the lights and try again tomorrow. At the end of the day, you’re the only person living in your body and you do know what’s going on, medical degree or not. Call a friend, laugh at a joke, eat a really good piece of cake. Do whatever it is that makes you feel like yourself and gives you the strength and courage to get back up.

And remember, you’re not crazy. You’re gutsy.

Jennie

Incorporating Patient-generated Information to Manage Health

Posted on 23 August 2012 by ImproveCareNow

e-Patient Nikolai (Kolya) Kirienko’s White House testimony is a must read if you feel it’s essential to have a voice and visibility into your own healthcare.

Testimony of Nikolai Kirienko
Project Director, Crohnology.MD
University of California, Berkeley
www.crohnology.md

Incorporating Patient-generated Information to Manage Health
HIT Policy Committee Hearing
June 8, 2012

Can’t This Thing Go Any Faster?

Posted on 21 August 2012 by nocolon33

This is not a typical post for me, but it’s important to me that I let you know that I feel your pain as parents and patients. I PROMISE that my next post will be an Alcatraz bathroom installment.

The darkest days for my son, Jedediah, clearly among the darkest days of my life, were those when Jed was in horrible pain. Often, going to the bathroom offered some relief; other times, not so much.

Like many of our kids prior to a new treatment taking effect or a surgery, Jed was basically housebound in the weeks leading up to his colectomy.

So, when we were recently on a car trip and Jed announced that he had to go to the bathroom, even though I knew he was not “in pain,” Sela and I WERE in pain. FOR him. We were flashing back to those darkest days.

Then, it was déjà vu all over again.

It was 1978 or thereabouts. My dad and I were on a car trip. I was fresh in remission from my stubborn UC onset—it took over a year of twice daily steroid enemas to get to remission. My folks, like Sela and I, had seen their child in pain with no way to relieve it.

I announce that I have to go to the bathroom, and my dad’s foot gets heavy all of a sudden. I know now what he was thinking. “Hey, I can DO SOMETHING here. If I go faster, I can make my son feel better quicker.” How many times have you wanted the ability to DO SOMETHING to make your son/daughter feel better?

The Tennessee Highway Patrol had other ideas. Pulled over for going about 20 mph over the speed limit, my dad pleaded with the officer to let him take his son to a bathroom. The police officer responded that the speeding ticket would cost $75 ($264 in 2012 dollars) and that my dad would have to follow him to the police station to pay the fine.

This was bad, and my dad didn’t want to make it any worse, so he let the police officer continue to talk about court, judges, etc. Then he says, “But if you give me $5 [$17.60 in 2012 dollars], you and your son can be on your way.”

And, that, my friends, is how one Tennessee Highway Patrolman bought lunch on that summer day in 1978.

Since 3rd Grade

Posted on 17 August 2012 by 2endibd

Remission is the goal for anyone diagnosed with IBD. The journey to achieve it, however, is long and winding. The first milestone for those with IBD is getting the diagnosis (another long and winding road; and a story all unto itself). The harsh reality of an IBD diagnosis sets in with the words, “there is no cure.” Enough said, onto mission-remission. The road to remission is marked by things like steroids, 6-MPs, biologics, surgeries, and more.

For our gutsy kid, remission finally came 18 months after diagnosis by starting Remicade infusions. Deciding to use this drug on our daughter was trying but necessary. No longer could we bear to see her so fatigued – at times she could not stand – or clinching her stomach in severe pain. Nor could we allow her to live in fear of bathroom accidents at school. We did not want her to endure another round of oral steroids or have another hospital stay. Asacol and Azithioprine only brought brief respite. What’s a parent to do?

With Ulcerative Colitis, every day she is sick is another day her colon becomes damaged; each day she is sick increases the chance of her colon needing to be removed. So Remicade it is. The agony of the decision and the stress of the first infusion led to exhaustion, for me anyway. But for our gutsy kid, she gained a new lease on life. The very next day she was energetic and happy. Out of the blue she exclaimed, “I feel so good!”. I asked her, “When was the last time you felt this good?” She paused, reflecting deeply for a moment, and responded, “Since 3rd grade.” At this time she was in 6th grade.

Our gutsy kid spent three years in pain and lost three years of her young life to suffering – mostly in silence. Even through her pain and suffering she strove to be all that she could be; competing in equestrian sports, participating in school sports, never complaining and seeking normalcy at all costs. We are proud of her bravery. We admire her tenacity. We are grateful to her medial team for giving her childhood back to her.

How many gutsy kids spend too much of their lives suffering in silence because of IBD? Too many. Thanks to the ImproveCareNow Network and the participating care centers like ours, more kids can achieve remission sooner and get back to the business of simply being kids.