Co-Designing a Collaborative Chronic Care Network (C3N) for Inflammatory Bowel Disease: Development of Methods

Abstract

Background: 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. Objective:The objective of this study was to report the methods used, with a diverse group of stakeholders, to translate the idea of a C3N to a set of actionable next steps. Methods:The setting was ImproveCareNow, an improvement network for pediatric inflammatory bowel disease. In collaboration with patients and families, clinicians, researchers, social scientists, technologists, and designers, C3N leaders used a modified idealized design process to develop a design for a C3N.Results: Over 100 people participated in the design process that resulted in (1) an overall concept design for the ImproveCareNow C3N, (2) a logic model for bringing about this system, and (3) 13 potential innovations likely to increase awareness and agency, make it easier to collect and share information, and to enhance collaboration that could be tested collectively to bring about the C3N. Conclusions:We demonstrate methods that resulted in a design that has the potential to transform the chronic care system into an LHS.

The role of co-production in Learning Health Systems

“…Transforming the health system by using commons-based peer production, coordinated into large, meaningful projects [ 22 , 29 , 39 , 42 ]…”

Development and implementation experience of a learning healthcare system for facility based newborn care in low resource settings: The Neotree

“…32 In the US, the "ImproveCareNow" network is a mature learning health system for child health aimed at improving health outcomes for children and young people with inflammatory bowel disease. 33 This network has demonstrated improvements in remission rates and growth through standardized data collection, monitoring, evaluation, as well as sustainable and collaborative care. Despite low-resource settings have the most to gain from learning health systems, such an approach is uncommon, perhaps due to a lack of knowledge, research, or logistical capacity.…”

“…One of the seven recommendations of a recent commission into the future of the UK NHS was to develop the culture, capability, and capacity to become a learning health system 32 . In the US, the “ImproveCareNow” network is a mature learning health system for child health aimed at improving health outcomes for children and young people with inflammatory bowel disease 33 . This network has demonstrated improvements in remission rates and growth through standardized data collection, monitoring, evaluation, as well as sustainable and collaborative care.…”

Measuring engagement in a collaborative learning health system: The case ofImproveCareNow

“…In a CLHS, engagement refers to the degree to which people (patients and families, clinicians, researchers, and others) are involved in creating and sharing information, knowledge, and knowhow to improve health and healthcare. [12][13][14][15] For example, in one CLHS (ImproveCareNow, described below), a group of highly engaged young people with inflammatory bowel disease (IBD) worked together to create a digital product describing experiences of patients who had undergone an ostomy. 16 The rationale for doing so included that they had "experienced a lack of psychosocial education about our surgeries.…”