Circle eNewsletter | 4 Dots Logo
By IMPROVECARENOW for Patients & Families living with Crohn's disease and ulcerative colitis
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July 2012 Rem Rate

Featured Stories
Sharing is caring.  If you know someone who would enjoy reading about ImproveCareNow and IBD, please forward a copy of CIRCLE to them.

41 and Counting
ImproveCareNow has just announced the joining of our 41st care center!  Cook Children's in Fort Worth, TX recently joins in the company of four new care centers.  Read more 

Compete w/ Crohn's
Did you follow Olympic sprint kayaker Carrie Johnson at the 2012 Summer Olympics in London?  Read more about Carrie, an inspiring athlete, who competes with Crohn's disease.

It Never Hurts to Ask 
An ImproveCareNow parent, working together with her child's doctor, presented a compelling case. The request: a single dorm room with access to a private restroom at college. The result: they got exactly what they asked for.  The letter is now available for download as a template or guide on the Families page of the ImproveCareNow website.  

Get Involved with ImproveCareNow and the C3N Project

Featured Article
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Are you in the LOOP?  LOOP is the official blog of ImproveCareNow - a place where everyone has a voice.  Patients, Families, Doctors, Researchers, Innovators. 

Recent LOOP posts below!

C3N Live Webcast | Featuring
C3N Live Webcast | Featuring Ginger
Listen and learn about how the C3N Project aims to transform chronic illness care.  Hear how collaborator is recruiting IBD patients to test the Passive PRO innovation and Track their own Data using a cell phone - helping to design an app that has the potential to predict IBD flares before they happen!

You can test the app today by, visiting:  
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The  Patient Advisory Council has grown from 20 to nearly 40 members in 2012.  Would you like to be part of a group of pediatric patients with IBD who work together - contributing to participatory medicine and the innovation of healthcare for patients everywhere who suffer from Crohn's and colitis?   


for info & to connect!
Welcome back to our CIRCLE.  Last issue we learned how ImproveCareNow uses data to drive improvements in pediatric IBD care.  This issue we learn more about the future and potential of data in the ImproveCareNow Network with an article by Keith Marsolo, PhD - Director of Software Development and Data Warehouse at Cincinnati Children's.  Also ImproveCareNow Network Development Coordinator, Sarah Nocito, writes about Trust, Value and ImproveCareNow.  Don't forget to visit Facebook when you're done reading.  We value your thoughts.
 Richard Colletti | Signature 1


ImproveCareNow [Enhanced] Registry
Keith Marsolo
Keith Marsolo, PhD

Optimizing Health Data to Improve Care & Outcomes 


Many ImproveCareNow centers have made the transition to electronic health records (EHRs). These EHRs are designed to replace the traditional paper chart. When a doctor or nurse asks questions about your health and well being and types the information into a computer, he or she is using an EHR. EHRs hold great promise - they can store medical history, lab test results, doctor's notes and more, all in a single digital record. All of the information about your care is in one place, and it can be easily accessed and evaluated by your doctor when they are making care recommendations. This will help prevent medical errors and ensure that your care plan is tailored to meet your specific needs. But this only happens if the information is entered into the EHR in a useful way.


In many hospitals and doctor's offices, EHRs simply function as a form of digital paper. A doctor types or dictates a note into the EHR and the result is stored as a big blob of text. While humans have no problem understanding such notes, they still pose problems for computers. That is why the ImproveCareNow centers are working together so that the data collected in their EHRs is more useful. Information about your care is captured as discrete data elements (sometimes called "smart data") instead of as plain text. These data elements can be analyzed and evaluated for multiple purposes, including improving clinical chronic illness care delivery, driving quality improvement and informing comparative effectiveness research. All of this work helps the centers design and deliver the best care for kids with Crohn's disease and ulcerative colitis (IBD).


One of the reasons ImproveCareNow centers have been so effective at improving the care and outcomes of kids with IBD is that they routinely collect (non-identifying) patient data, store these data in a registry and analyze them to understand more about individual patients and about the pediatric IBD population as a whole. Remember from the August CIRCLE, that "registry" is just a fancy word for a specialized database that is designed to securely store and analyze health data. ImproveCareNow's data-management team has developed specialized reports that look at outcome measures (% of children in remission) and data quality (% of visits with complete & accurate data). The reports are used by all ImproveCareNow centers to improve their care delivery process, which in turn leads to improved outcomes for patients. By driving out variation in how care is delivered, ImproveCareNow centers are ensuring that each child receives optimal care during each and every visit.


In the past, data made its way into the ImproveCareNow registry the same way it did in many other registries: it was manually typed or written into the patient's health record (electronic or paper) and the relevant pieces were then re-typed into the registry. This is called "double-data entry". It is a manual, inefficient process that uses up valuable staff time and is fraught with the potential for human error. But thanks to a grant from the Agency for Healthcare Research and Quality (AHRQ), all that is going to change.


Working with an informatics team at Cincinnati Children's Hospital Medical Center, ImproveCareNow is piloting the next generation of registries, where data is captured once in the EHR and sent directly to the registry. It is called "direct-data-transfer" and it has two major advantages. First, it frees up staff time from having to do double data entry and it cuts down on data quality errors. Second, it allows more data to be available in the registry, and at a faster pace. And because of the technology behind the registry, it will be possible to do things like generate custom reports on-demand. This allows ImproveCareNow clinicians to more easily perform tasks like pre-visit planning, which is used by the care team to prepare for a clinic visit, and population management, which helps ensure at-risk patients receive necessary attention between visits.


Perhaps the most exciting thing about this enhanced registry is that it will enable the ImproveCareNow Network to better engage patients in the care process. First, ImproveCareNow centers will be able to send reports to each patient, showing them how they compare to the rest of the ImproveCareNow patient population, along with personalized talking points to discuss with their care team. Second, surveys will be sent between visits, so parents can both rate how their child is doing and record items they wish to discuss with the care team at the next clinic visit. These features will help alleviate some of the stress of having to remember everything that happened in the time between visits and will help families get the best value out of their 20-minute clinic visit. These changes are coming soon and will further help ImproveCareNow with its mission - improving the care and health of kids with Crohn's disease and ulcerative colitis.
Sarah Nocito

Trust me, this is Valuable

Would you ever willingly brandish your name and social security number on the back of your tee-shirt? No, probably not. If the wrong person got ahold of it who knows what could happen; someone might have an epic shopping spree on your tab! Or worse.


And yet there are companies making a cushy living gathering identifying information from people. According to the US Census Bureau the US population was 305 million in mid-2008 and 176.8 million were credit cardholders. (Source: "The Survey of Consumer Payment Choice," Federal Reserve Bank of Boston, January 2010) So why does personal information roll so easily off the tongue when asked by a credit card company, a car dealer or a mortgage lender? Two words: trust and value.


By developing trust and providing value, credit card companies, for instance, have shifted social norms in their favor. I didn't think twice about applying for my first credit card while still in college. It just felt natural. And even when my credit card company mailed a new card because my account info was compromised, I was pretty much unfazed (mildly annoyed, perhaps). I enjoy the benefits and flexibility my card affords me - I see value in it. The value outweighs the risk for me.


So why do many still feel suspicious when a doctor asks permission to collect protected health information? Did you know ImproveCareNow doctors need your permission to enroll you into the program, to collect data during your office visits, and to securely store and analyze those data in our health registry - the largest pediatric IBD registry worldwide?  


And so we find ourselves back at trust and value. No one can make you trust ImproveCareNow, or compel you to find value in the work that ImproveCareNow is doing. I can, however, share what ImproveCareNow is: our mission, what you can expect from us, what we have achieved, and our vision and aims for the future. With this information I hope that you will decide to place your trust in us and find value in participating in this unique Network.  


ImproveCareNow is a non-profit learning health network, currently consisting of 41 participating care centers. Our mission is to improve the care and outcomes of kids with Crohn's disease and ulcerative colitis.


Medical centers, hospitals and practices that join ImproveCareNow collaborate with one another (not a common occurrence in healthcare), enroll patients, set aims, collect data, review reports and implement evidence-based changes to improve care delivery.   ImproveCareNow provides the tools and training; care centers assemble multidisciplinary teams to share the work and tap into collective wisdom.  


The Network relies on data (from thousands of ImproveCareNow patients just like you) to identify flaws (gaps) in pediatric IBD care. Data help us design tests and determine the best solutions to fix the gaps - so you can expect care that is increasingly more efficient and effective.  You can read more about this process in the first article in the August CIRCLE: A Model for Improvement.  Because we rely on data, we diligently protect it. Data managers and informatics specialists are responsible for this (a future issue of CIRCLE will feature an article that goes into detail on data security).


For decades there were no improvements in outcomes for IBD. ImproveCareNow has changed that. The percent of kids in ImproveCareNow who are in remission (feeling well, no symptoms, fully active) has risen from 50% to 75% - without any new medications. ImproveCareNow's early results in health outcomes for kids with IBD were published in the April 2012 journal Pediatrics.  


ImproveCareNow envisions a future where all pediatric IBD care facilities are participating in the Network, and all kids with IBD are receiving the best care possible. Ideally, we'd like to see 100% of kids in remission. In his article entitled ImproveCareNow [Enhanced] Registry, Keith Marsolo, describes the ImproveCareNow registry that is being piloted now, which will be a powerful resource for customizing and continually improving IBD care for our patients. As the largest pediatric IBD registry worldwide, it will provide a much needed foundation for research to understand more about pediatric IBD and chronic illness care. And most importantly, it will allow us to meaningfully involve patients and their families in our work, because as LOOP author jendavid91 (of The Gutsy Generation) put it: "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."  


The Value Proposition

Value is intensely personal. You must make up your own mind about where value lies for you.  So, I ask, now that you know a little more about ImproveCareNow, where do you see the value? Visit our Facebook page and post something that you value about ImproveCareNow.


About the author: Sarah Nocito is the Network Development Coordinator for ImproveCareNow.  She manages communications for the Network, and occasionally contributes articles and posts.  Sarah works in the National Office of ImproveCareNow, located in Burlington, VT.     

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Just a reminder, you are always invited to join ImproveCareNow online on Facebook, Twitter, YouTube and LOOP.  These are places where you can interact with a community of patients, families, clinicians and researchers who are sharing stories and information, where you can learn more about ImproveCareNow and help spread awareness of IBD.  

CIRCLE is an official publication of IMPROVECARENOW  | September 2012