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

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

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

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.

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.

On the day before my 21st birthday, my Mom informed me that I was now an adult and that I didn’t have to listen to my parents anymore (folks, you heard it here first!). I laughed at this, and inside I thought, can I really be turning 21? How is that even humanly possible?

As part of my summer research job, I was headed out of town on my birthday for a project. Everyone at work was apologetic about the untimely trip, my parents disappointed that they wouldn’t get to spend the day with me. I was unperturbed - completely happy and willing to travel for work on my birthday. And here is why:

I spent my 16th, 17th, and 19th birthdays in the hospital. I couldn’t eat the birthday cake, and all I wanted to do was stay wrapped in my covers and continue to watch McDreamy save lives on Grey’s Anatomy. My 19th birthday was particularly memorable. I was just under two weeks away from my ileostomy surgery, which I was so excited for I probably qualified for some diagnosable mental condition. The GI finally convinced me to try some pain medication, after I had refused it for some time (note: not because I was stoic, because I’d never had it for IBD before and thought it would be as effective as Tylenol for a massive head injury). And once I had the pain medication, life was awesome (pain control, where had you been all my life???). I was still in pain, but all of a sudden I didn’t care so much and my eyes just went a little blurry and I was instantly more comfortable. Everyone I had possibly ever known (and maybe even some people I didn’t know) came to say happy birthday and give gifts. I promise (sarcasm implied) if you want gifts for 6 months, have your birthday in the hospital and then get an organ removed. An appendix will do, no need to go for the colon. So if you can imagine me, sitting on my bed, happy as a clam and slightly (or okay, mostly) out of it, with gifts piled around me and people everywhere - then in walk people with guitars and they start singing happy birthday. I asked my parents about this, I swear I didn’t hallucinate it. As crazy and silly as that memory seems in hindsight, the very idea that two years later I could be pain-free and working on my birthday flabbergasts me. I was too sick to work, too sick to travel, too sick to enjoy my birthday.

So cue my 21st birthday: I was serenaded with happy birthday at work (being sung to by the chief cardiac surgeon was hilarious), piled in a car with my co-workers, had dinner, went for a run, watched the Olympics, and went to bed. A normal day. An ordinary day. But those of us with IBD know that normal is extraordinary, and days like that don’t come as easily or frequently as we’d like. As I was running, I took this photo and couldn’t help but smile at where I’ve been, and more importantly, where I’m going.

I know my future with IBD still exists, there are still uphill battles to lose and conquer, scars to earn and strength to be lent to me by those I love. But today, I am 21 and things are bright and shiny.

Fingers crossed, eyes wide open - adulthood, here I come.

Jennie

My college roomie does not have Inflammatory Bowel Disease. Yet, I’m convinced that if anyone stole my phone and read our daily text message exchanges, they would wholeheartedly believe that we both have a strange obsession with poop. We talk about poop a lot. More specifically, we make poop jokes a lot. Usually inappropriate poop jokes that I wouldn’t even repeat here. That’s not too much of a tragedy for you, since like most inside jokes between friends, you probably wouldn’t find them funny. Really, our sense of poop-humor is akin to the average six year old’s, but I wouldn’t have it any other way. It’s an incredible feeling to receive support from a friend without IBD. It’s even more incredible to laugh about poop with that friend. That’s the sign of a true ally, and it’s rare to find those outside of the IBD community. To get back to the recurring theme here, I’m crazy lucky.

Anyway, I started using the stool softener Miralax today to help with some IBD-related constipation. I texted from the parking lot outside the CVS: “Some have a closet full of beer at college. We’ll have a closet full of Miralax.”

A year ago, I sat at home crying and desperately searching the Internet for advice as I packed for my freshman year of college. I had a flare that wouldn’t let up and would need to use nightly enemas in my dorm room. I was convinced my roommate would think me a freak. What eighteen year old admits to using an enema? Who even uses an enema every night? For someone who claimed to be okay with her IBD, I really let my fear of rejection kick my rationality out the window. I practiced holding in an enema while sprinting from my bathroom to my bed. I bought a huge box to hide the prescription boxes. If I had known that over a year later, I’d still be using enemas nightly, I would have absolutely freaked.

Then, I got to college. I met my incredible friends. I realized I had blown the whole situation way out of proportion over the summer. When I first confided to my best friend that I use enemas, she barely blinked an eyelash. I was shocked. After all that panic, it turned out to be not a huge deal at all. A few weeks later, we watched “Dracula: Dead and Loving It” - which is a terribly funny movie I totally recommend that also happens to poke lots of fun at enemas (as a supposed cure for vampirism) - and I can guarantee that movie would not have been nearly as funny for us if I hadn’t (quite literally) let my enemas out of the box.

A year ago, I couldn’t have sent that text from outside CVS. I would have been terrified to bring packets of Miralax into my college dining hall. This year, I’m not even phased. I know it won’t be a big deal to her or any of my friends. In fact, I know there’s a greater chance of someone at the table making a joke over the white powder than anyone giving me a funny look for it. It’s just the way it is. My friends know me, know I have IBD, and know that it’s a serious disease that I’m okay with taking lightly sometimes. I am in a wonderful place that I wish was available to every IBD patient.

UC and Crohn’s are serious diseases. Chronic illness sucks and shouldn’t be taken lightly. That said, I think humor can make a world of difference in how a patient copes with their disease. I know I find it liberating to have a go at the disease that makes me go. I think nocolon33’s hilarious Alcatraz bathroom series is a great example of this. Humor is just another way I fight back against my disease. It may have my colon, but it’s got nothing on my spirit.

This summer’s family vacation was a trip to Disney World!! I had an awesome time. I watched my sister ride Mount Everest roller-coaster seven times.  I got to ride some rides myself;  my favorite was the new Star Wars ride.  The rides are good but the thing that stuck in my mind the most about the trip was an experience I had during one of the meals.

My parents bought a meal plan for us while we were there and this allowed us to enter into the Disney “system” that I had some food concerns.  This was cool because it meant the chef came out to our table for every sit-down meal we had, to talk to me about what foods I could eat. There was one particular chef at an Italian restaurant that we ate at on the last day that I really liked. All of the chefs before him, at other restaurants, were great and very pleasant, but they all seemed preoccupied with the food that they had left in the kitchen. This one chef was different – when he came to our table he took out a pad of paper and wrote down what my dietary needs were as we talked to him. Maybe it was his manner, or his attention to detail, but somehow he made me feel like I was his one and only concern at the time.

This experience confirmed in my mind something I learned from my experiences at Children’s Hospital in Cincinnati; it is the little things that matter; it is the little things that make or break a patient’s experience.

Last summer, at the same time as our family vacation this summer, I was in the hospital getting ready for resection surgery. One of the little things that I remember the most from that “vacation” was meeting the surgeon for the first time. My surgeon had a New York Yankees lanyard with his ID on it. I instantly could relate with him because I had something outside of my medical care that I could talk to him about – not that I am a Yankees fan; I am a Toronto Blue Jays fan so that made the conversations even more interesting. It is that personal touch, that relating to the person that was caring for me, that made a difference.

In a similar experience last year, I have a friend who on his first appointment when he met his new doctor, talked to that new doctor about Harry Potter for half of his appointment.  The  doctor was wearing a Gryffindor lanyard. I know another lanyard story; I am convinced lanyards are magical! The magic is in the conversation they bring.

It is the little things that count.  From food to lanyards or chefs to doctors ...  it is these little things that patients remember and make all the difference in the world to the overall experience.  Whether you are going through the trauma of a hospital stay or the trauma of an IBD patient trying to eat out, it is these simple things that make the patient see the caregiver as a person; someone that cares about you and even a little less scary.

Remission. Hearing the word always made me think of cancer and the hope that goes along with achieving remission. Having served as a volunteer and a member of the board of directors for a cancer non-profit organization for seven years, I shared many moments of joy with many cancer survivors for having achieved remission, the "R" word. During treatment it is the hope, but often not spoken of until you finally get that word from your medical team. Little did I know that the "R" word would enter my world in the way that it did - through my daughter's IBD diagnosis in August of 2010 at the age of 9. Upon hearing that it was Ulcerative Colitis ravaging her body, consuming her childhood, and sapping her energetic persona I became a mother living for the "R" - remission.

Policing Your brASS

Guilty.  Guilty as charged.  Big time.  This goes back a long way, too.

I don’t clean up after myself well.

As we’ve established in previous posts, I have no colon.  But I have been poop-challenged for almost 40 years.  Sure, I had some periods of UC remission where I, arguably, pooped like regular boys and girls.

But I also had (and continue to have) long stretches of loose stools.  And, of course, there were the loose and bloody stools.

[Brief aside:  I try to tell patients and their families that bleeding in UC can be the most benign symptom.    And it’s easy to say that one drop of blood can make the whole bowl red and that you shouldn’t overreact .  From first-hand experience, though, I also know how terrifying it is to see blood in your bowl or, worse, in your child’s bowl.  End of brief aside.]

I’m a huge NCIS fan.  That’s another story, but it’s from NCIS that I learned the phrase, “policing your brass.”  It’s meant to refer to picking up your spent shell casings after shooting a gun or rifle.  Being a good housekeeper, if you will.

“Policing your brASS” refers to cleaning up after yourself following a messy poo.

As Sela says, “nobody wants to sit on your $hit.”

I have to say that I was better about this when I used to bleed.  I think this was because I made it too easy for the poo detectives back then.

Poo Detective:  Can you describe the scene?

Poo Witness:  There were red, watery dots all over the seat and bowl.

Poo Detective:  Did you say “red”?

Poo Witness:  Yes sir.

Poo Detective:  He’s at it again.  Han.

Poo Witness:  How can you be sure?

Poo Detective:  Well, we’ll go through the registry of bloody pooers in the neighborhood, but Han had the means and opportunity.  And he works on this floor.  We’re pretty sure we have our man.

This is not a strength of mine.  My performance at Alcatraz Bathrooms is much, much better than my performance on my home field.

Not to make excuses, but the after hours poos present my biggest challenge.  Why?  Well, my vision is about 20-6000, so I don’t see too well without glasses or contacts.  Following a nocturnal trip to the loo, I may police my brASS and think that everything is hunky dory.

But the killer always makes a mistake, doesn’t he?  He fired four shots but only remembered three.  He picked up three spent casings and missed the fourth.  He’s caught, red (or brown) handed.

Please, please be courteous to the next user of toilet, whether it’s a family member, a co-worker, a friend or a stranger.  Again, as Sela says, “nobody wants to sit on your $hit.”