Co-designing a collaborative chronic care network (C3N) for inflammatory bowel disease: development of methods

Published February 22, 2018

Seid M, Dellal G, Peterson LE, Provost L, Gloor PA, Fore DL, Margolis PA . Co-designing a collaborative chronic care network (C3N) for inflammatory bowel disease: development of methods. JMIR Hum Factors 2018;5(1): e8

Our health care system fails to deliver necessary results, and incremental system improvements will not deliver needed change. Learning health systems (LHSs) are seen as a means to accelerate outcomes, improve care delivery, and further clinical research; yet, few such systems exist. We describe the process of codesigning, with all relevant stakeholders, an approach for creating a collaborative chronic care network (C3N), a peer-produced networked LHS.

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"A Guide to Gutsy Living": Patient Driven Development of a Pediatric Ostomy Toolkit

Published April 2018

David J, Jofriet A, Seid M, Margolis PA. "A Guide to Gutsy Living": Patient Driven Development of a Pediatric Ostomy Toolkit. Pediatrics 2018;141(5): e20172789

In this article, patients describe how they harnessed the capacity of a collaborative chronic care network and were supported to develop a psychosocial resource that patients needed.

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Additional links

A Guide to Gutsy Living - on LOOP

New Guide helps kids, adolescents living with ostomies

Learning health systems as facilitators of precision medicine

Published February 17, 2017 

Ramsey L, Mizuno T, Vinks A, Margolis PA. Learning health systems as facilitators of precision medicine.  Clinical Pharmacology & Therapeutics 2017; 101(3): 359-367

The concept of the learning health system offers promise to facilitate personalized medicine. In children, serious illness is uncommon, so generating and applying new knowledge therefore requires networks of institutions. To illustrate the concept of the Learning Health System, we describe the example of the ImproveCareNow Network. We then use a network case study to illustrate how the concept of precision medicine can be achieved through a Learning Health System in a real-world clinical environment.

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Race differences in initial presentation, early treatment, and 1-year outcomes of pediatric Crohn's disease: results from the ImproveCareNow network

Published May 2017

Dotson JL, Cho M, Bricker J, Kappelman MD, Chisolm DJ, Tomer G, Crandall WV . Race differences in initial presentation, early treatment, and 1-year outcomes of pediatric Crohn's disease: results from the ImproveCareNow network.  Inflamm Bowel Dis 2017;23(5): 767-774

Racially disparate care has been shown to contribute to suboptimal health care outcomes for minorities. Using the ImproveCareNow network, we investigated differences in management and outcomes of pediatric patients with Crohn's disease at diagnosis and 1-year post-diagnosis.

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Perianal Crohn's disease in a large multicenter pediatric collaborative

Published May 5, 2017

Adler J, Dong S, Eder S, Dombkowski K . Perianal Crohn's disease in a large multicenter pediatric collaborative. J Pediatr Gastroenterol Nutr 2017;64(5): e117-e124

Although perianal complications of Crohn disease (CD) are commonly encountered in clinical practice, the epidemiology of perianal CD among populations of children is poorly understood. We sought to characterize the prevalence of perianal disease in a large and diverse population of pediatric patients with CD.

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Quality items required for running a paediatric Inflammatory Bowel Disease Centre: an ECCO paper

Published August 1, 2017

Turner D, Carle, A, Steiner S, Margolis PA, Colletti R, Russell RB, Levine A, Kolho K, Ruemmele F, ICN Network . Quality items required for running a paediatric Inflammatory Bowel Disease Centre: an ECCO paper.  Journal of Crohn's and Colitis 2017;11(8): 981-987 

The importance of a holistic approach with a comprehensive multidisciplinary team, including nutritional and psychosocial support, is becoming well recognised as a key contributor to optimal care in paediatric inflammatory bowel disease [IBD]. The Paediatric committee of ECCO [P-ECCO] aimed to determine important components that would contribute to quality of care in a paediatric IBD centre.

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Fistulizing Crohn's Disease Presenting After Surgery on a Perianal Lesian

Published March 2016

Singer AA, Gadepalli SK, Eder SJ, Adler J. Fistulizing Crohn's disease presenting after surgery on a perianal lesion.  Pediatrics 2016; 137(3)

Perianal skin lesions, such as skin tags, can be an early presenting sign of Crohn’s disease.  Surgical intervention on these lesions may increase the risk of fistula development and lead to worse outcomes.  This case series examined 8 patients who underwent surgical intervention on what appeared to be benign perianal skin lesions, only to reveal fistulas leading to the diagnosis of Crohn’s disease.

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Improving Clinical Remission Rates in Pediatric Inflammatory Bowel Disease with Previsit Planning

Published July 1, 2016

Savarino JR, Kaplan JL, Winter HS, et al. Improving clinical remission rates in pediatric inflammatory bowel disease with previsit planning.  BMJ Quality Improvement Reports 2016; 5(1): 1-5

Inflammatory Bowel Disease (IBD) is a chronic autoimmune inflammatory disease of the intestine which can lead to malnutrition, poor quality of life, and colon cancer.  Although there is no cure for the disease, clinical remission is the primary goal.  The Center for Inflammatory Bowel Disease at MassGeneral Hospital for Children adopted a Previsit Planning model to identify and discuss symptomatic patients prior to their appointments to identify specific issues that impact disease management.

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Improving pediatric inflammatory bowel disease (IBD) follow-up

Published August 17, 2016

Dykes D, Williams E, Margolis PA, Ruschman J, Bick J, Saeed S, Opipari L. Improving pediatric inflammatory bowel disease (IBD) follow-up.  BMJ Quality Improvement Reports 2016; 5(1)

Standardization of Inflammatory Bowel Disease (IBD) care through participation in the ImproveCareNow (ICN) Network has improved outcomes for pediatric patients with IBD, but under the current care model, our improvements have plateaued. Current ICN model care guidelines recommend health supervision visits every six months. We identified a gap in our practice's ability to ensure either a routine six month follow-up or a rapid follow-up after a disease flare, and a significant number of patients with active disease status during a six month period lacked timely reassessment after interventions or medication changes. Telemedicine provides an alternative method of care delivery to address these gaps, but has had limited use in patients with IBD.

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Feasibility and validity of the pediatric ulcerative colitis activity index in routine clinical practice

Published February 2015

Dotson JL, Crandall WV, Zhang P, Forrest CB, Bailey CJ, Colletti RB, Kappelman MD. Feasibility and validity of the pediatric ulcerative colitis activity index in routine clinical practice.  J Ped Gastroenterol Nutr 2015;60:200-4

The Pediatric Ulcerative Colitis Activity Index (PUCAI) is a noninvasive disease activity index developed as a clinical trial endpoint.  More recently, practice guidelines have recommended the use of PUCAI in routine clinical care.  We therefore sought to evaluate the feasibility, validity, and responsiveness of PUCAI in a large, diverse collection of pediatric gastroenterology practices.

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A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research

Published August 17, 2015

Marsolo K, Margolis PA, Forrest CB, Colletti RB, Hutton J.  A digital architecture for a network-based learning heath system—integrating chronic care management, quality improvement, and research. eGEMs 2015;3:16.

We collaborated with the ImproveCareNow Network to create a proof-of-concept architecture for a network-based Learning Health System.  This collaboration involved transitioning an existing registry to one that is linked to the electronic health record (EHR), enabling a “data in once” strategy.  We sought to automate a series of reports that support care improvement while also demonstrating the use of observational registry data for comparative effectiveness research.

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Pilot Development of an Electronic Pediatric Inflammatory Bowel Disease Quiz-Game

Published September 2015

Tung J, Grunow J, Jacobs N.  Pilot development of an electronic pediatric inflammatory bowel disease quiz-game.  J Ped Gastroenterol Nutr 2015;61:292-6

Data suggest physicians poorly assess disease-specific literacy and transition readiness in pediatric patients with inflammatory bowel disease (IBD).  We piloted an electronic, interactive iPad quiz game that could be used in a clinical setting, with the aims of measuring IBD-related knowledge, and concomitant mood and quality of life (QOL) in a pediatric population.

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Co-production of healthcare service

Published September 16, 2015

Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Opipari-Arrigan L, Hartung H. Co-production of healthcare service.  BMJ Quality & Safety 2015; 25(8): 1-9

Efforts to ensure effective participation of patients in healthcare are called by many names-patient centeredness, patient engagement, patient experience.  Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products.

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Engagement, Peer Production, and the Learning Healthcare System

Published March 2014

Seid M, Margolis PA, Opipari-Arrigan L. Engagement, peer production, and the learning healthcare system.  JAMA Pediatr 2014;168(3):201-202

Physicians deliver about half of indicated care, and patients do about half of what it takes to stay healthy, despite the best intentions and tireless efforts of both physicians and patients.  The learning healthcare system (LHS) has been proposed as a solution.

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Implementable strategies and exploratory considerations to reduce costs associated with anti-TNF therapy in inflammatory bowel disease

Published May 2014

Park KT, Crandall WV, Fridge J, Leibowitz IH, Tsou M, Dykes D, Hoffenberg EJ, Kappelman MD, Colletti RB. Implementable strategies and exploratory considerations to reduce costs associated with anti-TNF therapy in inflammatory bowel disease.  Inflamm Bowel Dis 2014; 20:946-51

A health care system is needed where care is based on the best available evidence and is delivered reliably, efficiently, and less expensively (best care at lower cost).  In gastroenterology, anti-tumor necrosis factor agents represent the most effective medical therapeutic option for patients with moderate-to-severe inflammatory bowel disease (IBD), but are very expensive and account for nearly a quarter of the cost of IBD care, representing a major area of present and future impact in direct health care costs.

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Effectiveness of anti-TNF for Crohn’s disease: research in a pediatric learning health system

Published July 2014

Forrest CB, Crandall WV, Bailey LC, Zhang P, Joffe MM, Colletti RB et al.  Effectiveness of anti-TNF for Crohn’s disease: research in a pediatric learning health system. Pediatrics 2014; 134:37-44

ImproveCareNow (ICN) is the largest pediatric learning health system in the nation and started as a quality improvement collaborative.  To test the feasibility and validity of using ICN data for clinical research, we evaluated the effectiveness of anti-tumor necrosis factor-α (anti-TNFα) agents in the management of pediatric Crohn disease (CD).

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PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network

Published July 2014

Forrest CB, Margolis P, Seid M, Colletti RB.  PEDSnet: How a prototype pediatric learning health system is being expanded into a national network.  Health Affairs 2014; 33:1171-7

Except for a few conditions, pediatric disorders are rare diseases.  Because of this, no single institution has enough patients to generate adequate sample sizes to produce generalizable knowledge.

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Seasonality and pediatric inflammatory bowel disease

Published July 2014

Lee GJ, Dotson JL, Kappelman MD, King E, Pratt JE, Colletti RB, Bistrick S, Burkam JL, Crandall WV, the ImproveCareNow Network.  Seasonality and pediatric inflammatory bowel disease.  J Pediatr Gastroenterol Nutr 2014; 59:25-8

Seasonal and geographic variations of inflammatory bowel disease (IBD) exacerbations have been described in adults, with inconsistent findings.  We sought to determine whether disease activity in pediatric-onset IBD is associated with a seasonal pattern.

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Routine use of tiopurines in maintaining remission in pediatric Crohn's disease

Published July 21, 2014

Boyle BM, Kappelman MD, Colletti RB, Baldassano RN, Milov DE, Crandall WV.  Routine use of thiopurines in maintaining remission in pediatric Crohn's disease.  World J Gastroenterol 2014; 20:9185-90

The multi-center Pediatric Inflammatory Bowel Disease Network (PIBDNet) cohort study prospectively collected data on thiopurine naïve patients initiating mercaptopurine (6MP) or azathioprine. Patients with a diagnosis of Crohn’s disease (CD) were included in our study upon entering remission as determined by physician global assessment (PGA) within 365 d of initiation of thiopurines.

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Use of the emergency department in pediatric inflammatory bowel disease  

Published September 2014

Hoffenberg EJ, Park KT, Fridge J, Leibowitz I, Tsou M, Dykes D, Kappelman M, Colletti RB. Use of the emergency department in pediatric inflammatory bowel disease.  J Pediatr Gastroenterol Nutr 2014;59: 324–326

We sought to characterize emergency department (ED) encounters for pediatric inflammatory bowel disease (IBD) to identify areas for prevention.

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Download a list of 2014 Publications

Implementation of a registry for quality improvement

Published April 19, 2013

Brennan CW, Groves PS, Colletti RB.  Implementation of a registry for quality improvement. Proceedings, Academy for Healthcare Improvement 2012 Conference, Advancing the Methods for Healthcare Quality Improvement Research.  Implementation Science 2013;8(Suppl 1):S4

Crohns’ Disease and ulcerative colitis, or Inflammatory Bowel Disease (IBD), are rare in the pediatric population. Thus, conducting research centered on improving the quality of pediatric IBD care can be challenging for individual pediatric gastroenterology centers. By pooling data and sharing results across 35 care centers nationally, the ImproveCareNow network provides the opportunity for conducting quality improvement (QI) research aimed at improving care and outcomes for pediatric patients with IBD and their families. The network serves as a platform for innovation and the establishment of evidence-based practices for IBD care.

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Exemplar pediatric collaborative improvement networks: Achieving results

Published June 2013

Billett AL, Colletti RB, Mandel KE, Miller M, Muething SE, Sharek PJ, Lannon CM.  Exemplar pediatric collaborative improvement networks: Achieving results.  Pediatr 2013;131:S196-S203

A number of pediatric collaborative improvement networks have demonstrated improved care and outcomes for children. Regionally, Cincinnati Children's Hospital Medical Center Physician Hospital Organization has sustained key asthma processes, substantially increased the percentage of their asthma population receiving "perfect care," and implemented an innovative pay-for-performance program with a large commercial payor based on asthma performance measures.

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Improved Outcomes in a Quality Improvement Collaborative for Pediatric Inflammatory Bowel Disease

Published April 12, 2012

Crandall WV, Margolis PA, Kappelman MD, King EC, Pratt JM, Boyle BM, Duffy LF, Grunow JE, Kim SC, Leibowitz I, Schoen BT, Colletti RB, for the ImproveCareNow Collaborative.  Improved outcomes in a quality improvement collaborative for pediatric inflammatory bowel disease.  Pediatrics 2012;129:e1030-e1041

There is evidence of significant variation in the care of pediatric patients with ulcerative colitis. Variation in the delivery of effective therapy may reduce the likelihood of favorable outcomes. Quality Improvement (QI) methods aimed at improving systems of care delivery can reduce unwanted variation and improve patient outcomes.

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What’s in a name generator? Choosing the right name generators for social network surveys in healthcare quality and safety research

Published July 10, 2012

Burt RS, Meltzer DO, Seid M, Borgert A, Chung JW, Colletti RB, Dellal G, Kahn S, Kaplan H, Peterson L, Margolis P.  What’s in a name generator? Choosing the right name generators for social network surveys in healthcare quality and safety research. BMJ Qual Saf 2012;21:992-1000

Interest in the use of social network analysis (SNA) in healthcare research has increased, but there has been little methodological research on how to choose the name generators that are often used to collect primary data on the social connection between individuals for SNA.

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Role of gender in the treatment and clinical outcomes of pediatric patients with inflammatory bowel disease

Published December 2012

Lee GJ, Kappelman MD, Boyle B, Colletti RB, King E, Pratt JM, Crandall WV.  Role of gender in the treatment and clinical outcomes of pediatric patients with inflammatory bowel disease.  J Pediatr Gastroenterol Nutr 2012; 55:701-6

We performed a cross-sectional analysis of children with Crohn disease (CD) and ulcerative colitis (UC) using data from the ImproveCareNow Network collected between May 2007 and May 2010. Clinical remission, disease severity, body mass index (BMI) z scores, normal height velocity, and medication use were analyzed by sex and age.

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ImproveCareNow: The Development of a Pediatric Inflammatory Bowel Disease Improvement Network

Published January 17, 2011

Kappelman MD, Crandall WV, Colletti RB, Goudie A, Leibowitz IH, Duffy, Crandall W, Kappelman MD, Colletti RB, Leibowitz I, Grunow JE, Ali S, Baron HI, Berman JH, Boyle B, Cohen S, del Rosario F, Denson LA, Duffy L, Integlia MJ, Kim SC, Milov D, Patel AS, Schoen BT, Walkiewicz D, Margolis P. ImproveCareNow: the development of a pediatric IBD improvement network. Inflamm Bowel Dis 2011;17:450‐7  

There is significant variation in diagnostic testing and treatment for inflammatory bowel disease. Quality improvement science methods can help address unwarranted variations in care and outcomes.

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Short Pediatric Crohn’s Disease Activity Index for Quality Improvement and Observational Research 

Published January 17, 2011

Kappelman MD, Crandall WV, Colletti RB, Goudie A, Leibowitz IH, Duffy L, Milov DE, Kim SC, Schoen BT, Patel AS, Grunow J, Larry E, Fairbrother G, Margolis P, ImproveCareNow Collaborative.  Short pediatric Crohn’s disease activity index for quality improvement and observational research.  Inflamm Bowel Dis 2011;17:112–117

Practical and objective instruments to assess pediatric Crohn’s disease (CD) activity are required for observational research and quality improvement. The objectives were: 1) to determine the feasibility of completing the Pediatric Crohn’s Disease Activity Index (PCDAI) and the Abbreviated PCDAI (APCDAI); and 2) to create a Short PCDAI by retaining and reweighting the most practical and informative components.

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Development of process and outcome measures for improvement: Lessons learned in a quality improvement collaborative for pediatric Inflammatory Bowel Disease

Published March 2011

Crandall WV, Boyle BM, Colletti RB, Margolis PA, Kappelman MD.  Development of process and outcome measures for improvement: lessons learned in a quality improvement collaborative for pediatric inflammatory bowel disease.  Inflamm Bowel Dis 2011;17:2184–219

The Institute of Medicine's publications, To Err is Human and Crossing the Quality Chasm, publicized the widespread deficits in healthcare quality. The quality of care in inflammatory bowel disease (IBD) has not been comprehensively evaluated, in part due to a lack of well-established IBD measures of quality.

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Prevalence and Epidemiology of Overweight and Obesity in Children with Inflammatory Bowel Disease 

 Published October 17, 2011

Long MD, Crandall W, Leibowitz IH, Duffy L, del Rosario F, Kim SC, Integlia M, Berman J, Grunow J, Colletti RB, Schoen BT, Patel AS, Baron H, Israel E, Russell G, Ali S, Herfarth HH, Martin C, Kappelman MD.  Prevalence and epidemiology of overweight and obesity in children with inflammatory bowel disease. Inflamm Bowel Dis 2011;17:2162–2168

Obesity is a significant public health threat to children in the United States. The aims were to: 1) Determine the prevalence of obesity in a multicenter cohort of children with inflammatory bowel disease (IBD); 2) Evaluate whether overweight and obese status is associated with patient demographics or disease characteristics.

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Variation in Care in Pediatric Crohn’s Disease

Published September 2009

Colletti, RB, Baldassano RN, Milov DE, Margolis PA, Bousvaros A, Crandall WV,  Crissinger KD, D’Amico MA, Day AS, Denson LA, Dubinsky M,  Ebach DR, Hoffenberg EJ,  Kader HA, Keljo DJ, Leibowitz IH, Mamula P, Pfefferkorn MD,  Qureshi MA,  for PIBDNet—the Pediatric IBD Network for Research and Improvement.  Variation in care in pediatric Crohn’s disease.  J Pediatr Gastroenterol Nutr 2009;49:297-303

Variation in medical care can be a barrier to improving clinical outcomes. We aim to describe the variation in care of Crohn disease as provided by a broad sample of pediatric gastroenterologists.

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