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

Abstract

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. Aggregating electronic clinical data from millions of children across many pediatric institutions holds the promise of producing sufficiently large data sets to accelerate knowledge discovery. However, without deliberately embedding these data in a pediatric learning health system (defined as a health care organization that is purposefully designed to produce research in routine care settings and implement evidence at the point of care), efforts to act on this new knowledge, reducing the distress and suffering that children experience when sick, will be ineffective. In this article we discuss a prototype pediatric learning health system, ImproveCareNow, for children with inflammatory bowel disease. This prototype is being scaled up to create PEDSnet, a national network that will support the efficient conduct of clinical trials, observational research, and quality improvement across diseases, specialties, and institutions.

Patient focused registries can improve health, care, and science

“…Thus, though the registry had initially focused on measuring simple remission rates, partnering with patients revealed that patients and their families were more interested in prolonged, steroid-free remissions, which have improved from 55% to 78% in participating practices. 16 The network has now added two UK sites (in Cambridge and London).…”

Are Patients With Cancer Less Willing to Share Their Health Information? Privacy, Sensitivity, and Social Purpose

“…These data create unique opportunities to advance population health through research (eg, comparative-effectiveness studies), quality improvement (eg, measurement of physician performance), and public health activities (eg, disease surveillance). [2][3][4] Enthusiasm for the concept of rapid learning health systems is substantial within the oncology community, driven by the desire to optimize clinical practice and advance research in a field with a particularly complex evidence base and heterogeneous disease. 5 The American Society of Clinical Oncology aims to launch CancerLinQ, 6 which will collect data from a wide range of sources, including patient records, to support clinical cancer care and conduct cancer research.…”

The Learning Exchange, a Community Knowledge Commons for Learning Networks: Qualitative Evaluation to Test Acceptability, Feasibility, and Utility (Preprint)

“…There is also a robust, asynchronous communication infrastructure featuring a newsletter, blog and social media platforms on Twitter, Facebook and Instagram. [20] All ICN members are encouraged to continuously design and test network-wide, center-specific, and personal innovations to make collaborative and participatory care more efficient and effective, ultimately leading to improved outcomes. They also use communication structures to share the status of innovations with the network and learn from and apply the work from other centers to their own.…”