Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network.

Background: Coproduction is defined as patients and clinicians collaborating equally and reciprocally in healthcare and is a crucial concept for quality improvement (QI) of health services. Learning Health Networks (LHNs) provide insights to integrate coproduction with QI efforts from programmes from various health systems.

Objective: We describe interventions to develop and maintain patient and family partner (PFP) coproduction, measured by PFP-reported and programme-reported scales.

Building a regional pediatric asthma learning health system in support of optimal, equitable outcomes.

Introduction: Asthma is characterized by preventable morbidity, cost, and inequity. We sought to build an Asthma Learning Health System (ALHS) to coordinate regional pediatric asthma improvement activities.

Methods: We generated quantitative and qualitative insights pertinent to a better, more equitable care delivery system.

Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks.

Introduction: Patient engagement has historically referenced engagement in one's healthcare, with more recent definitions expanding patient engagement to encompass patient advocacy work in Learning Health Networks (LHNs). Efforts to conceptualize and define what patient engagement means-and what patient engagement means-are, however, lacking and a barrier to meaningful and sustainable patient engagement via patient advisory councils (PACs) across LHNs.

Methods: Several co-authors (Madeleine Huwe, Becky Woolf, Jennie David) are former ImproveCareNow (ICN) PAC members, and we integrate a narrative review of the extant literature and a case study of our lived experiences as former ICN PAC members.

Pre-exercise protein intake is associated with reduced time in hypoglycaemia among adolescents with type 1 diabetes.

Aim: Secondary analyses were conducted from a randomized trial of an adaptive behavioural intervention to assess the relationship between protein intake (g and g/kg) consumed within 4 h before moderate-to-vigorous physical activity (MVPA) bouts and glycaemia during and following MVPA bouts among adolescents with type 1 diabetes (T1D).

Materials And Methods: Adolescents (n = 112) with T1D, 14.5 (13.

Eating behaviors and estimated body fat percentage among adolescents with type 1 diabetes.

Aims: Estimate associations between select eating behaviors and estimated body fat percentage (eBFP) and explore effect modification by sex among adolescents with type 1 diabetes (T1D).

Methods: This analysis included 257 adolescents (mean age 14.9 ± 1.

The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact.

Introduction: The Cystic Fibrosis (CF) Foundation sponsored the design, pilot testing, and implementation of the CF Learning Network (CFLN) to explore how the Foundation's Care Center Network (CCN) could become a learning health system. Six years after the design, the Foundation commissioned a formative mixed methods evaluation of the CFLN to assess: CFLN participants' understanding of program goals, attributes, and perceptions of current and future impact.

Methods: We performed semi-structured interviews with CFLN participants to identify perceived goals, attributes, and impact of the network.

Establishing a Cystic Fibrosis Learning Network: Interventions to promote collaboration and data-driven improvement at scale.

Introduction: A learning health network is a type of learning health system in which stakeholders use network organization to improve health and health care. Building on existing resources in the cystic fibrosis (CF) community, the Cystic Fibrosis Learning Network (CFLN) was designed to improve medical outcomes and quality of life through an intentional focus on achieving reliable evidence-based chronic care delivery and creating a system for data-driven collaborative learning.

Methods: We describe the development and growth of the CFLN considering six domains of a Network Maturity Grid: system leadership; governance and policy management; quality improvement (QI); engagement and community building; data and analytics; and research.

A High Protein Diet Is Associated with Improved Glycemic Control Following Exercise among Adolescents with Type 1 Diabetes.

Nutritional strategies are needed to aid people with type 1 diabetes (T1D) in managing glycemia following exercise. Secondary analyses were conducted from a randomized trial of an adaptive behavioral intervention to assess the relationship between post-exercise and daily protein (g/kg) intake on glycemia following moderate-to-vigorous physical activity (MVPA) among adolescents with T1D. Adolescents ( = 112) with T1D, 14.

Web-Based Mindfulness-Based Interventions for Well-being: Randomized Comparative Effectiveness Trial.

Background: Mindfulness can improve overall well-being by training individuals to focus on the present moment without judging their thoughts. However, it is unknown how much mindfulness practice and training are necessary to improve well-being.

Objective: The primary aim of this study was to determine whether a standard 8-session web-based mindfulness-based cognitive therapy (MBCT) program, compared with a brief 3-session mindfulness intervention, improved overall participant well-being.

Toward an ontology of collaborative learning healthcare systems.

Objective: To establish a basis for a domain ontology - a formal, explicit specification of a shared conceptualization - of collaborative learning healthcare systems (CLHSs) in order to facilitate measurement, explanation, and improvement.

Methods: We adapted the "Methontology" approach to begin building an ontology of CLHSs. We specified the purpose of an ontology, acquired domain knowledge via literature review, conceptualized a common framework of CLHSs using a grounded approach, refined these concepts based on expert panel input, and illustrated concept application via four cases.

More hypoglycemia not associated with increasing estimated adiposity in youth with type 1 diabetes.

Background: Despite the widespread clinical perception that hypoglycemia may drive weight gain in youth with type 1 diabetes (T1D), there is an absence of published evidence supporting this hypothesis.

Methods: We estimated the body fat percentage (eBFP) of 211 youth (HbA1c 8.0-13.

Cystic fibrosis learning network telehealth innovation lab during the COVID-19 pandemic: a success QI story for interdisciplinary care and agenda setting.

Introduction: The Cystic Fibrosis Foundation chronic care guidelines recommend monitoring clinical status of a patient with cystic fibrosis (CF) through quarterly interdisciplinary visits. At the beginning of the COVID-19 pandemic, the Cystic Fibrosis Learning Network (CFLN) designed and initiated a telehealth (TH) innovation lab (TH ILab) to support transition from the classic CF care model of quarterly in-person office visits to a care model that included TH.

Aim: The specific aims of the TH ILab were to increase the percentage of virtual visits with interdisciplinary care (IDC) from 60% to 85% and increase the percentage of virtual visits in which patients and families participated in shared agenda setting (AS) from 52% to 85% by 31 December 2020.

Impact of guideline-recommended dietitian assessments on weight gain in infants with cystic fibrosis.

Background: Cystic fibrosis (CF)-specialized nutrition care strives to meet normal infant growth, but the relationship of dietitian assessments to weight outcomes is unknown. We characterize nutrition management for inadequate weight gain and assess association of dietitian assessments and center-level weight-for-age Z-scores (WAZ).

Methods: We used encounter data from 226 infants across 28 US CF Centers from the Baby Observational Nutritional study between January 2012 through December 2017.

A science of collaborative learning health systems.

Introduction: Improving the U.S. healthcare system and health outcomes is one of the most pressing public health challenges of our time.

Getting what is needed, when it's needed: Sharing information, knowledge, and know-how in a Collaborative Learning Health System.

Background: Collaborative Learning Health Systems (CLHS) improve outcomes in part by facilitating collaboration among all stakeholders. One way to facilitate collaboration is by creating conditions for the production and sharing of medical and non-medical resources (information, knowledge, and knowhow [IKK]) so anybody can get "what is needed, when it's needed" (WINWIN) to act in ways that improve health and healthcare. Matching resources to needs can facilitate accurate diagnosis, appropriate prescribing, answered questions, provision of emotional and social support, and uptake of innovations.

A collaborative learning health system agent-based model: Computational and face validity.

Introduction: Improving the healthcare system is a major public health challenge. Collaborative learning health systems (CLHS) - network organizations that allow all healthcare stakeholders to collaborate at scale - are a promising response. However, we know little about CLHS mechanisms of actions, nor how to optimize CLHS performance.

Sustainable generation of patient-led resources in a learning health system.

Background: Patient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and family voices into healthcare. One such PFAC is the Patient Advisory Council (PAC) of the ImproveCareNow (ICN) network, a learning health system dedicated to advancing the care of individuals with pediatric inflammatory bowel disease (IBD). Using quality improvement techniques and co-production, the PAC has made great strides in developing novel patient-led resources.

A maturity grid assessment tool for learning networks.

Background: The vision of learning healthcare systems (LHSs) is attractive as a more effective model for health care services, but achieving the vision is complex. There is limited literature describing the processes needed to construct such multicomponent systems or to assess development.

Methods: We used the concept of a capability maturity matrix to describe the maturation of necessary infrastructure and processes to create learning networks (LNs), multisite collaborative LHSs that use an actor-oriented network organizational architecture.

Measuring engagement in a collaborative learning health system: The case of ImproveCareNow.

Background: Collaborative learning health systems have demonstrated improved outcomes for a range of different chronic conditions. Patient and healthcare provider engagement in these systems is thought to be associated with improved outcomes. We have adapted an observational framework to measure, and track over time, engagement in ImproveCareNow, a collaborative learning health system for children with inflammatory bowel disease.

Changes to care delivery at nine international pediatric diabetes clinics in response to the COVID-19 global pandemic.

Background: Pediatric diabetes clinics around the world rapidly adapted care in response to COVID-19. We explored provider perceptions of care delivery adaptations and challenges for providers and patients across nine international pediatric diabetes clinics.

Methods: Providers in a quality improvement collaborative completed a questionnaire about clinic adaptations, including roles, care delivery methods, and provider and patient concerns and challenges.

Cystic Fibrosis Point of Personalized Detection (CFPOPD): An Interactive Web Application.

Background: Despite steady gains in life expectancy, individuals with cystic fibrosis (CF) lung disease still experience rapid pulmonary decline throughout their clinical course, which can ultimately end in respiratory failure. Point-of-care tools for accurate and timely information regarding the risk of rapid decline is essential for clinical decision support.

Objective: This study aims to translate a novel algorithm for earlier, more accurate prediction of rapid lung function decline in patients with CF into an interactive web-based application that can be integrated within electronic health record systems, via collaborative development with clinicians.