ImproveCareNow Research


YouMeIBD: Making the Connection

Today is the last day of Crohn's and Colitis Awareness Week - a week of awareness and pride. Four and a half years ago, my world was rocked by my diagnosis of ulcerative colitis. April 22, 2008. Today, though, I'd like to suggest that my story really starts nearly three years later on April 11, 2011.

 

Three simple little words sparked many of my closest relationships: You. Me. IBD. Jennie and I are a perfect example. Although we have since found we have much more than our diagnosis in common, our friendship began because I also have IBD and (with an embarrassing amount of enthusiasm) wanted to write for her blog. YouMeIBD is also the name of a soon-to-launch C3N innovation. Young tech-savvy IBD patients are apt to go to the Internet looking for support, but they (a) may not know a safe community in which to find it or (b) may feel too timid or cautious to 'friend' others within a support community such as a Facebook group. We all may have the same diagnosis, but we all know our diagnosis is not our identity. YouMeIBD works on the presumption that mutual interests are far better indicators of friendship potential, and thus suggests friends for a patient based on mutual likes and dislikes.

 

How? A game-like quiz prompts users to answer questions about their likes and dislikes. Their answers, along with other information shared with the app, matches them to other patients within their age range with similar interests. Users can also create their own questions. The theory behind all of this is that use of YouMeIBD will be associated with increased patient social network density and engagement, an increased sense of well-being among patients, and ultimately better health outcomes. Why are connections between patients important?

 

 

 

In April 2008, I came home from the hospital with a link for an online support community. I shrugged it off with excuses for why I was okay on my own - and I was. For nearly three years, I got along just okay on my own - but just okay isn't wonderful. I felt a hole, but I knew it wasn't because I needed help. It took me three years to realize the opportunity to be a friend is just as valuable as the opportunity to have a friend. On April 11, 2011, I came home from school, where few knew my diagnosis and even less knew my story, and for reasons I can't remember, decided I was ready to click the link. I found a community that day. My world was rocked for the second time. The day I sparked my first connection around three words: You. Me. IBD.

 

 

 

Web MeetingYouMeIBD will facilitate those connections for so many more patients. By sharing our stories and connecting with other patients, we will be not only benefiting ourselves but the community as a whole. The research behind YouMeIBD suggests that while much communication regarding chronic illness among patients tends to be negative (though absolutely understandable), positive communication fosters motivation, happiness, and confidence. The psychosomatic effect of a patient's support community, or lack thereof, is profound. YouMeIBD's mission is to enable positive and constructive relationships, the key to which is connecting patients with ties between them that go deeper than their diagnosis. Jennie and I have contributed to the development of YouMeIBD for several months, and I speak for both of us when I say we are thrilled to be nearing the launch date for an application with so much potential.

 

 

 

A wonderful mentor of mine, whom I met through that very first online support community, once advised me: "If it's scary, then you should run at it even harder." It's a quote I keep on my computer desktop because I believe in it so wholeheartedly. IBD is scary, but I think it's even scarier if you allow that fear to paralyze you from taking steps forward toward recovery - of the body and the spirit. It took me three years to grow the courage to share my story and find support, but I would not be here celebrating Crohn's and Colitis Awareness Week or writing this blog post if I had not run towards that fear. Be brave. Reach out. Get involved. We've shared with you many opportunities this week, and there are so many more if you open yourself up to the possibilities. On April 11, 2011, I found the confidence to reach out, and that same confidence carried me to writing for this blog. It will be scary, but do it anyway.


Population Management Drives Improvement at University of Michigan

The ImproveCareNow Quality Improvement (QI) Team at the University of Michigan has been working very hard at improving their QI processes.  They now have had a long trend of improving remission rates from one population management report (PMR) to the next. But like any good researcher, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?

 

Physician Leader Dr. Jeremy Adler thought that major contributors to improved remission rates over the past year include: 1) improved processes with more complete data collection, 2) educating clinicians who misunderstood the methodology and consistently misclassified visits, and 3) new and improved PMR process, in that order.

 

Dr. Adler's team began digging through their data, and leaned a few things.  In the interest of helping others in the ImproveCareNow Network - which is what collaborative medicine is all about -  the Michigan team shared what they learned from analyzing their data.



Here is what the Michigan Team learned - in Dr. Adler's words:

 

University of Michigan QI Team Analysis of Remission Rates 1. We are still collecting data on paper forms (we just went live with EPIC).  We had a high rate of visits with missed data capture.  So many of the data points were old.  We made many attempts to improve return rates of data forms, which eventually improved our data collection rates.  We also have had several changes in our forms designed to help highlight questions that were frequently missed.

 

So I went through our pre-visit planning (PVP) forms to manually calculate remission rates from the column "PGA Remission Status" (# patients in remission / # total patients).  I then went through Excel to exclude the data points where the data were >200 days old.

 

On the enclosed graph, the red line represents the original remission rate from the PMR. The blue line represents remission rates with data >200 days old excluded.  I was surprised to see that there is very little difference.  I suspect that this means that when we miss data collection, we miss it for everyone, not just sick patients.

 

2. I then learned that a provider had a misunderstanding of the Physician Global Assessment (PGA), and was routinely classifying based on overall disease course, rather than disease activity at the time of the visit.  I then went into excel to exclude all the data from that provider (green line).  Again the remission rates did not change substantially.

 

3. This leads me to believe that our improvement in remission rates may be true improvements in disease status.  The improvement in remission rates starting in April-May coincides with when we began routinely having population management meetings, and routinely acting on our findings.

 

University of North Carolina at Chapel Hill QI Team Quote about Population Management


Collective Wisdom to Improve Health and Health Care

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


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