The Learning Exchange, a Community Knowledge Commons for Learning Networks: Qualitative Evaluation to Test Acceptability, Feasibility, and Utility
Published March 14, 2019
McLinden D, Myers S, Seid M, Busch M, Davis D, Murphy J . The Learning Exchange, a Community Knowledge Commons for Learning Networks: Qualitative Evaluation to Test Acceptability, Feasibility, and Utility. JMIR Form Res 3 2019;(1): e9859
Learning Networks are distributed learning health systems that enable collaboration at scale to improve health and health care. A key requirement for such networks is having a way to create and share information and knowledge in furtherance of the work of the community. We describe a Learning Exchange—a bespoke, scalable knowledge management and exchange platform initially built and tested for improving pediatric inflammatory bowel disease outcomes in the ImproveCareNow (ICN) Network—and assess evidence of its acceptability, feasibility, and utility in facilitating creation and sharing of information in furtherance of the work of the community and as a model for other communities.
Population Management: A Tool to Improve Timely Care in Pediatric and Young Adult Patients with Inflammatory Bowel Disease
Published July 18, 2019
Prendaj E, Thomas S, Tomer G. Population Management: A Tool to Improve Timely Care in Pediatric and Young Adult Patients with Inflammatory Bowel Disease. Gastroenterology Research and Practice 2019
Maintenance of health leads to better outcomes in patients with chronic illness. ImproveCareNow, an international inflammatory bowel disease (IBD) quality improvement (QI) network, recommends maintenance-of-health visits twice a year. We identified a gap in care, with only 64% of IBD patients having documented visits within 200 days. Therefore, we sought to improve our follow-up rate to a goal of 80%.
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Research Explained - on LOOP
Patient-Clinician Collaboration in the Development of an IBD Transfer Toolkit
Published September 2019
Kennedy S, Maddux MH. Patient-Clinician Collaboration in the Development of an IBD Transfer Toolkit. Pediatrics 144 2019;(3)
Within ICN, the Transition Task Force was created in 2014 to identify, test, and measure the impact of quality-improvement tools and strategies related to improving the processes of transition and transfer within the ICN pediatric gastrointestinal centers.* This task force has been led by a pediatric gastroenterologist and a pediatric psychologist (M.H.M.) with expertise in pediatric IBD and is composed of 1 patient with IBD, who is a member of the ICN PAC (S.T.K.); 4 additional pediatric gastroenterologists; 1 ICN quality-improvement coordinator; and a research coordinator.
This project evolved from the shared experiences of PAC members, namely our desire to have a resource that compiles transfer-related information deemed essential by patients. Recognizing the need and importance of transfer planning among young people and adults with IBD, we, as a patient (S.T.K.) and a clinician (M.H.M), partnered with the PAC to develop the Transfer Toolkit.
Learn more about Transitioning to Adult Care and Download the Transfer Toolkit
Depression Screening in Pediatric IBD Clinics: Recommendations and a Toolkit for Implementation
Published September 2019
Mackner LM, Whitaker BN, Maddux MH, Thompson S, Hughes-Reid C, Drovetta M, Reed-Knight B. Depression Screening in Pediatric IBD Clinics: Recommendations and a Toolkit for Implementation. J Pediatr Gastroenterol Nutr 2019
The objective of this article is to establish clinical guidelines for depression screening in youth diagnosed with IBD and to provide resources for implementation. The psychosocial screening task force group comprised of psychologists and social workers in the ImproveCareNow (ICN) learning health system reviewed research and clinical guidelines in other fields, and consulted with physicians, nurses, other psychosocial professionals, patients with IBD, and parents of children with IBD in ICN. It is recommended that adolescents with IBD ages 12 and older be screened for depression annually. Additional practical recommendations for implementation, triage, and treatment within the pediatric gastroenterology clinic are also provided.
Implementing a Novel Quality Improvement-Based Approach to Data Quality Monitoring and Enhancement in a Multipurpose Clinical Registry
Published September 2019
Pratt J, Jeffers D, King EC, Kappelman MD, Collins J, Margolis P, Baron H, Bass JA, Bassett MD, Beasly GL, Benkov KJ, Bornstein JA, Cabrera JM, Crandall W, Dancel LD, Garin-Laflam MP, Grunow JE, Hirsch BZ, Hoffenberg E, Israel E, Jester TW, Kiparissi F, Lakhole A, Lapsia SP, Minar P, Navarro FA, Neef H, Park KT, Pashankar DS, Patel AS, Pineiro VM, Samson CM, Sandberg KC, Steiner SJ, Strople JA, Sudel B, Sullivan JS, Suskind DL, Uppal V, Wali PD. Implementing a novel quality improvement-based approach to data quality monitoring and enhancement in a multipurpose clinical registry. EGEMS 2019; 7(1): 51
The impact of data quality improvement support to care centers was evaluated using statistical process control methodology. Data quality measures were defined, performance feedback of those measures using statistical process control charts was implemented, and reports that identified data items not following data quality checks were developed to enable centers to monitor and improve the quality of their data.
Evaluating the Comparative Effectiveness of Two Diets in Pediatric Inflammatory Bowel Disease: A Study Protocol for the Series of N-of-1 Trials
Published November 2019
Kaplan HC, Opipari-Arrigan L, Schmid CH, Schuler CL, Saeed S, Braly KL, Burgis JC, Nguyen K, Pilley S, Stone J, Woodward G, Suskind DL. Evaluating the comparative effectiveness of two diets in pediatric inflammatory bowel disease: A study protocol for a series of n-of-1 trials. Healthcare 2019; 7(4): 129
Inflammatory bowel disease (IBD) affects 3 million children and adults in the US. Treatment involves medications with considerable risk profiles. Dietary modification, such as the specific carbohydrate diet (SCD), may be helpful in treating IBD, but there is insufficient evidence of its effectiveness. N-of-1 trials are ideal for addressing this important research question. The Personalized Research on Diet in Ulcerative Colitis and Crohn's Disease (PRODUCE) study employs a series of 50 individual N-of-1 trials that compare the SCD to a modified SCD. Treatment periods are assigned in blocks of two, with each patient completing two balanced treatment blocks. Patients are randomized to start with the SCD or modified SCD and alternate between conditions for four eight-week periods. A mobile app guides collecting and viewing data, transitioning diets, and reviewing personal results. Primary outcomes include patient reported outcomes (PROs) of stool frequency, stool consistency, pain interference, and gastrointestinal (GI) symptom severity. We examine changes in inflammation via fecal calprotectin. Participants will receive a personalized answer regarding comparative effectiveness between the SCD and a less restrictive diet option (modified SCD), as well as compared to their baseline diet. We will aggregate the results of completed N-of-1 trials across patients to estimate population level comparative effectiveness of these treatments and the effectiveness of each diet.
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Organizing for collaboration: An actor-oriented architecture in ImproveCareNow
Published November 2019
Seid M, Hartley DM, Dellal G, Myers S, Margolis PA. Organizing for collaboration: An actor-oriented architecture in ImproveCareNow. Learning Health Systems 4 2019;(1): e10205
Collaborative learning health systems (CLHSs) enable patients, clinicians, researchers, and others to collaborate at scale to improve outcomes and generate new knowledge. An organizational framework to facilitate this collaboration is the actor‐oriented architecture, composed of (a) actors (people, organizations, and databases) with the values and abilities to self‐organize; (b) a commons where they create and share resources; and (c) structures, protocols, and processes that facilitate multiactor collaboration. CLHSs may implement a variety of changes to strengthen the actor‐oriented architecture and enable more actors to create and share resources.
Networked health care: Rethinking value creation in learning health systems
Published December 2019
Fjeldstad OD, Johnson JK, Margolis PA, Seid M, Hoglund P, Batalden P. Networked health care: Rethinking value creation in learning health care systems. Learning Health Systems 2019
Creating better value in health care service today is very challenging. The social pressure to do so is real for every health care system and its leadership. Real benefit has been achieved in manufacturing sector work by the use of “value-chain” thinking, which assumes that the work is a series of linked processes necessary to make a product. For those activities in health care systems that are similar, this model may be very helpful. Attempts to “install” the value chain widely in health care systems have, however, been frustrating. As a result, well-meaning leaders seeking better value have resorted to programs of cost reduction, rather than service redesign. Professionals have not been very happy or willing participants. The work of health care service invites an expanded model of value creation, one that better matches the work. This paper proposes a networked architecture that can mobilize and integrate the resources of health care professionals, interested patients, family, and other community members in the delivery and improvement of health care systems. It also suggests how this value-creation architecture might contribute to research and the development of new knowledge. Two cases illustrate the proposed architecture and its implications for system design and practice, technology development, and roles and responsibilities of all actors involved in health care systems. We believe that this model better fits the need of making and improving health care services. This expanded understanding of how value is created invites attention by senior leaders, by those attempting to facilitate the improvement of current systems, by patients and clinicians involved in the daily work of health care service coproduction, by those charged with the preparation and formation of future professionals, by those who measure and conduct research in health care services, and by those leading policy, payment, and reimbursement systems.