Fostering Collaboration Through Creation of an IBD Learning Health System

A framework for value-creating learning health systems

“…committees, advisory groups)• Multidisciplinary teams and working groups within strategic clinical networks in Alberta [51]• ‘Clinical communities’ bringing together clinicians and researchers at Johns Hopkins Medicine [47]• DARTNet learning communities enabling learning from high performing clinical sites [52]• Geisinger Health System Patient and Family Advisory Council and Patient Experience Steering Committee [30]• ImproveCareNow Exchange online knowledge and resource hub [53]• Change Group within regional community of practice in lung cancer care [29]Technological• Expertise in information technology and data science• Information technology systems• Health technologies or devices• Data infrastructures (e.g. electronic health records, clinical or administrative databases, clinical registry)• Communication technologies and platforms• Web or mobile applications• Data warehouses and marts• Interoperability frameworks• Kaiser Permanente HealthConnect electronic health records system [54]• PCORNet Distributed Research Network Architecture [55]• EHR-linked multicentre clinical registries [32, 56]• Data warehouses supporting research and clinical care [48, 57–59]• Open source tools for data access, queries and analysis [31, 58]• Dashboards for visualisation of EHR or clinical registry data [29, 34, 60]• Electronic systems for capturing patient-reported outcomes data [61, 62]• Machine learning algorithms used in CancerLinQ [63]• Listserv for communication across IBD care centres [60]Policy• Governance and accountability structures and systems• LHS policies• LHS performance frameworks and incentive systems• Funding mechanisms for LHS operations and sustainability• Steering and advisory committees of the PaTH LHS [58]• Governance Councils and performance milestones within LHSNet [64]• Data collaboration agreements governing sharing and use of data across sites [59]• Accountability chain at Johns Hopkins Medicine [47]• Merit-based incentive system for EHR adoption through the MACRA [65, 66]• Data quality assessment policies and procedures [61, 63]Legal• Privacy legislation• Laws governing healthcare institutions, organisations and professionals• Other laws, regulations and rules relevant to LHS activities• HITECH Act [67]• MACRA Act [66]Ethical• Ethics expertise• Ethical review boards and committees• Ethics guidelines, frameworks and rules• CancerLinQ regulatory framework and guiding principles for the ethical management and use of data [63, …”

Aiming for quality: a global compass for national learning systems

“…The learning cycle starts with the patient–clinician interaction at the point of care [ 102 ]. The third feature of a learning system is generating standardized approaches to care and quality measures based on patient data collected at the point of care combined with research and expertise [ 103 , 104 ]. Quality measures include processes of care, patient experience, and patient outcomes.…”

“…Quality measures include processes of care, patient experience, and patient outcomes. They are used to test new ideas, in assessing performance against best practices, and for benchmarking and improvement across the health system [ 104 – 106 ]. Quality measures and incentives are needed to encourage continuous learning and improvement and achievement of common quality goals [ 83 , 105 , 107 – 109 ].…”

“…The fourth feature of a learning system is leveraging technology (e.g., electronic health records and patient registries, and virtual platforms) to collect “real-world evidence” at the point of care, provide real-time access to knowledge including clinical decision support tools and treatment options, and facilitate the flow of knowledge between the participants of the learning system [ 94 , 104 , 108 , 110 – 114 ].…”

Population Health Management for Inflammatory Bowel Disease

“…IBD Qorus is a learning health system collaborative through the Crohn's and Colitis Foundation that focuses on studying the impact of a co-production model (in which both patients and providers contribute data) on patient outcomes across 30 academic and community gastroenterology practices caring for approximately 20,000 adults with IBD. 38 Co-production models offer distinct advantages over IBD specialty homes, particularly in resource-limited countries, as the level of engagement and infrastructure can be tailored to local needs and resource availability. The visualization of at-risk patients and physician-or system-level performance metrics can be personalized based on drivers of cost to that specific region or country or local guideline recommendations and availability of alternative therapies (ie, biosimilars).…”