Michael Seid

• PhD
• Professor (Full) at Cincinnati Children's Hospital Medical Center

Purpose Individuals who self-report as Black or African American are historically underrepresented in genome-wide studies of disease risk, a disparity particularly evident in pediatric disease research. To address this gap, Cincinnati Childrens Hospital Medical Center (CCHMC) established a biorepository and developed a comprehensive DNA sequencing...

Ongoing experience and emerging evidence suggest that Collaborative Learning Health Systems (CLHSs) are a promising approach to transforming population outcomes and organizational care processes. As implied in their name, this type of Learning Health System both promotes and relies upon collaboration to achieve its aims. However, to realize the pro...

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 in...

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...

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. We used electronic healt...

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 successful patient engagement means—are, however, lack...

Citation: Muntis, F.R.; Smith-Ryan, A.E.; Crandell, J.; Evenson, K.R.; Maahs, D.M.; Seid, M.; Shaikh, S.R.; Mayer-Davis, E.J. A High Protein Diet Is Associated with Improved Glycemic Control Following Exercise among Adolescents with Type 1 Diabetes. Nutrients 2023, 15, 1981. Abstract: Nutritional strategies are needed to aid people with type 1 diab...

Background and aims: Tumor Necrosis Factor inhibitors (TNFi), including infliximab and adalimumab, are a mainstay of pediatric Crohn's disease (PCD) therapy; however, non-response and loss of response is common. As combination therapy with methotrexate may improve response, we performed a multi-center, randomized, double-blind, placebo-controlled...

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...

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 intenti...

Research Objectives The Barriers to Care Questionnaire (BCQ) is a measure of healthcare access and quality containing 5 subscales (pragmatics, skills, marginalization, expectations, and knowledge/beliefs) developed for parents of children with chronic health conditions. The objective of this study was to examine the internal consistency and constru...

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 8.0-13.0%, age 13-16) at baseline, 6, and 18 months of the Flexible Life...

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 supp...

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 purpos...

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 purpose of this study was to compare standard with brief mindfulness training to improve ov...

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 mindfulne...

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...

The SARS-CoV-2 virus emerged and spread quickly, leading to a pandemic within weeks of the first recognized cases. In this chapter, we describe a successful effort to develop and maintain situational awareness of COVID-19 presence and effects across Southwestern Ohio. Healthcare, public health, schools, and businesses organized and worked together...

Introduction Improving the U.S. healthcare system and health outcomes is one of the most pressing public health challenges of our time. Previously described Collaborative Learning Health Systems (CLHSs) are a promising approach to outcomes improvement. In order to fully realize this promise, a deeper understanding of this phenomenon is necessary....

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...

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. Agent‐based m...

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). Us...

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 abo...

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 decis...

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 decis...

Introduction Youth with type 1 diabetes (T1D) commonly do not meet HbA1c targets. Youth‐directed goal setting as a strategy to improve HbA1c has not been well characterized and associations between specific goal focus areas and glycemic control remain unexplored. Objective To inform future trials, this analysis characterized intended focus areas o...

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...

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...

Objectives To compare real-world effectiveness of two adaptive treatment strategies of disease-modifying antirheumatic drugs (DMARDs) in treating children with newly diagnosed polyarticular course juvenile idiopathic arthritis (pcJIA): early aggressive use of biologic DMARDs (bDMARDs) in combination with conventional synthetic DMARDs (csDMARDs) ver...

Cystic fibrosis (CF) is a progressive, genetic disease characterized by frequent, prolonged drops in lung function. Accurately predicting rapid underlying lung-function decline is essential for clinical decision support and timely intervention. Determining whether an individual is experiencing a period of rapid decline is complicated due to its het...

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 t...

Background 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...

Introduction: Productive interactions between engaged patients and clinical teams are key to effective clinical practice. Accordingly, the identification of needs and priorities through the process of collaborative goal setting is fundamental to patient-centered care. Executing a goal-setting process that is truly collaborative is challenging; many...

Importance The Flexible Lifestyles Empowering Change (FLEX) trial, an 18-month randomized clinical trial testing an adaptive behavioral intervention in adolescents with type 1 diabetes, showed no overall treatment effect for its primary outcome, change in hemoglobin A1c (HbA1c) percentage of total hemoglobin, but demonstrated benefit for quality of...

Aims Using an 18‐month, multisite randomized control trial as an exemplar, the aim of this study was to identify themes related to adolescent and parental feasibility and acceptability for participation in large behavioural trials designed to improve adolescents’ Type 1 diabetes self‐management. Methods Thematic analysis methodology was used to de...

Objective To examine the prevalence and correlates of non‐severe hypoglycemia in adolescents with type 1 diabetes and suboptimal glycemic control, an understudied topic in this group. Methods Seven days of blinded continuous glucose monitor data were analyzed in 233 adolescents at baseline of the Flexible Lifestyle Empowering Change (FLEX) trial (...

Introduction The Flexible Lifestyle Empowering Change Study (FLEX) is a multi-site randomized controlled trial to test the efficacy of an adaptive behavioral intervention to promote self-management and improve glycemic control for adolescents with type 1 diabetes mellitus. A two-step recruitment process was used to optimize study retention by facil...

Background: Adolescents with type 1 diabetes commonly have poor glycaemic control. We aimed to test the efficacy of a newly developed adaptive behavioral intervention (Flexible Lifestyles Empowering Change; FLEX) on metabolic and psychosocial outcomes in adolescents with type 1 diabetes. Methods: Young people (13-16 years, type 1 diabetes durati...

Background Adolescents with type 1 diabetes commonly have poor glycaemic control. We aimed to test the efficacy of a newly developed adaptive behavioral intervention (Flexible Lifestyles Empowering Change; FLEX) on metabolic and psychosocial outcomes in adolescents with type 1 diabetes. Methods Young people (13–16 years, type 1 diabetes duration >1...

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 rel...

The US National Academy of Sciences has called for the development of a Learning Healthcare System in which patients and clinicians work together to choose care, based on best evidence, and to drive discovery as a natural outgrowth of every clinical encounter to ensure innovation, quality and value at the point of care. However, the vision of a Lea...

Background: 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. Objective: We describe a Learning Exchange-a bespoke, scalable know...

BACKGROUND 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. OBJECTIVE We describe a Learning Exchange—a bespoke, scalable knowl...

The Flexible Lifestyle Empowering Change (FLEX) Intervention Study is a multi-site randomized controlled trial to test the efficacy of an adaptive behavioral intervention to promote self-management for youth with type 1 diabetes mellitus (T1D). This paper details FLEX design, demographic characteristics of the sample, and outcome variables at basel...

Rationale: Individuals with cystic fibrosis are at risk for prolonged drops in lung function, clinically termed rapid decline, during discreet periods of the disease. Objectives: To identify phenotypes of rapid pulmonary decline and determine how these phenotypes are related to patient characteristics. Methods: A longitudinal cohort study of c...

Aims: To determine the association between dietary intake and risk of non-severe hypoglycemia in adolescents with type 1 diabetes. Methods: Type 1 adolescents from a randomized trial wore a blinded continuous glucose monitoring (CGM) system at baseline for one week in free-living conditions. Dietary intake was calculated as the average from two...

BACKGROUND Network-based Learning Health Systems that facilitate patient, clinician and researcher collaboration are emerging as a means to improve health and the healthcare system. The first step to engaging in a network is becoming aware that one exists. OBJECTIVE Our objective was to determine whether an Internet-based communication campaign wi...

Background Healthcare improvement work benefits from diverse stakeholder participation. Great strides are being made towards formal collaborative relationships with patients and their caregivers. But how will we know if these overtures evolve into true partnerships? Reliable methods for tracking participation are needed to understand and enumerate...

Objective: This study was conducted to identify factors contributing to health satisfaction outcomes among emerging adults (ages 18–25) with diabetes. Method: SEARCH for Diabetes in Youth study participants whose diabetes was prevalent in 2001 and were ≥18 years of age when they completed a 2008–2009 follow-up survey (n = 340) were included. We dev...

Purpose: Health-related quality of life (HRQOL) is a critical diabetes outcome, yet differences between youth and parent-proxy ratings can make interpretation difficult. This study aims to explore potential differences between self- and parent-reports of Pediatric Quality of Life Inventory (PedsQL) scores from youth with type 1 (T1D) or type 2 dia...

Background and objectives: Complicated vascular anomalies have limited therapeutic options and cause significant morbidity and mortality. This Phase II trial enrolled patients with complicated vascular anomalies to determine the efficacy and safety of treatment with sirolimus for 12 courses; each course was defined as 28 days. Methods: Treatment...

Efforts to ensure effective participation of patients in healthcare are called by many names-patient centredness, patient engagement, patient experience. Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products. Services, however, are fundamentally different than prod...

Cystic fibrosis is a progressive disease requiring a complex, time-consuming treatment regimen. Nonadherence may contribute to an acceleration of the disease process. Spirituality influences some parental healthcare behaviors and medical decision-making. We hypothesized that parents of children with cystic fibrosis, when classified into groups base...

Efforts to ensure effective participation of patients in healthcare are called by many names – patient centeredness, patient engagement, patient experience. Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products. Services, however, are fundamentally different than p...

AimTo determine the potential effect sizes for the Flexible Lifestyle for Youth (FL3X) behavioural intervention to improve glycaemic control (HbA1c) and quality of life for at-risk adolescents with Type 1 diabetes.Methods Participants [n=61; age 12–16 years, HbA1c 64–119 mmol/mol (8–13%)] were randomized to FL3X (minimum three sessions) or usual ca...

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...

The present study aimed to examine perceptions of shared decision-making (SDM) in caregivers of youth with type 1 diabetes (T1D). Interview, survey data, and HbA1c assays were gathered from caregivers of 439 youth with T1D aged 3-18 years. Caregiver-report indicated high perceived SDM during medical visits. Multivariable linear regression indicated...

To examine the longitudinal associations between sex, diabetes self-care, and the health-related quality of life (HRQL) of children and adolescents with type 1 or type 2 diabetes. The sample included 910 participants with type 1 and 241 participants with type 2, ages 10-22 years at baseline, from the Search for Diabetes in Youth Study, a longitudin...

To describe the prevalence of access and process barriers to health care and to examine their relationship to sociodemographic and disease factors in a large and diverse cohort of US youth with type 1 diabetes. A cross-sectional analysis of 780 youth who participated in the SEARCH for Diabetes in Youth Study and were diagnosed with type 1 diabetes...

Objective To examine the degree to which nonmedical factors explain additional variance in parent proxy report and child self-report of health-related quality of life (HRQOL) among newly diagnosed children with juvenile idiopathic arthritis (JIA) after accounting for medical factors. Methods Parents (of children ages 2-16 years; n = 230) and patien...

Physicians deliver about half of indicated care, and patients do about half of what it takes to stay healthy, despite the best intentions and tireless efforts of both physicians and patients. The learning healthcare system (LHS) has been proposed as a solution. As envisioned by the Institute of Medicine, an LHS would “generate and apply the best ev...

This paper introduces Collaborative Innovation Networks as an engine for self-organizing disruptive innovation. It is illustrated by the metaphor of the bee swarm through four lessons from the beehive: “centralized leadership – rotating leaders – waggle dance – attraction pheromone” as key principles for managing self-organizing teams of creators....

A learning health system enables patients, clinicians, and researchers to work together to choose care based on the best evidence, drive discovery as a natural outgrowth of patient care, and ensure innovation, quality, safety, and value in health care; all in a more real-time fashion. Our paper describes how goal-directed design (GDD) methods were...

Background and objective: Nephrotoxic medication exposure represents a common cause of acute kidney injury (nephrotoxin-AKI) in hospitalized children. Systematic serum creatinine (SCr) screening has not been routinely performed in children receiving nephrotoxins, potentially leading to underestimating nephrotoxin-AKI rates. We aimed to accurately...

Rationale: The efficacy of inhaled tobramycin on chronic Pseudomonas aeruginosa infections in patients with cystic fibrosis (CF) has been established in clinical trials. However, little is known about its clinical effectiveness on lung function outside randomized controlled trial settings; conventional analysis of existing registry data has hereto...

Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distribu...

Religious coping is associated with health outcomes in adolescents with chronic disease. Identifying potentially modifiable spiritual factors is important for improving health outcomes. The purpose of this study was to determine if associations exist between rate of change in pulmonary function and subsequent religious coping by adolescents with cy...

A limited number of studies address parental faith and its relationship to their children's health. Using cystic fibrosis as a disease exemplar in which religion/spirituality have been shown to play a role and parental health behaviors (adherence to their child's daily recommended home treatments) are important, this study explored whether parents...

Objective: Youth with type 1 diabetes mellitus are at risk for poor glycemic control as they age into adulthood. The aim of this study was to describe sociodemographic and clinical correlates of poor glycemic control associated with the transfer of care from pediatric to adult diabetes providers among a cohort of youth with type 1 diabetes diagnos...

Objectives: To examine the content validity of the Patient-Reported Outcomes Measurement Information System pediatric measures, including the pain interference scale, among children and adolescents (aged 8-18 years) who experience chronic pain. To describe children's understandings of the health domain constructs and elucidate verbal and conceptua...

Background Interest in the use of social network analysis (SNA) in healthcare research has increased, but there has been little methodological research on how to choose the name generators that are often used to collect primary data on the social connection between individuals for SNA. Objective We sought to determine a minimum set of name generato...

Chronic illness is a significant stressor; the majority of Americans cope utilizing spirituality. Numerous studies demonstrate links between spiritual coping and health outcomes. The purpose of this study was to determine whether persons diagnosed with cystic fibrosis (CF) as adults use spirituality to cope and influence disease management. Semi-st...

The course of cystic fibrosis (CF) progression in children is affected by parent adherence to treatment plans. The Theory of Reasoned Action (TRA) posits that intentions are the best behavioral predictors and that intentions reasonably follow from beliefs ("determinants"). Determinants are affected by multiple "background factors," including spirit...

Migration status and the accompanying diversity in culture, foods and family norms, may be an important consideration for practitioners providing individualized care to treat and prevent complications among youth with diabetes. Approximately 20 % of youth in the US have ≥1 foreign-born parent. However, the proportion and characteristics of youth wi...

To evaluate the reliability and cluster structure of the Pediatric Quality of Life Inventory Type 1 Diabetes Module 3.0 (PedsQL-T1DM) and associated subscales and to explore the associations between PedsQL-T1DM total score and demographic and clinical characteristics and clinical indicators among a large racially/ethnically diverse cohort of youth...

Hyperglycemia is common in critically ill children and appears to be associated with poor outcomes. However, the incidence of hypoglycemia while attempting glycemic control using an insulin infusion may be as high as 25% and hypoglycemia may be an independent risk factor for mortality in critically ill children. An improvement team developed a guid...

In this paper we describe a longitudinal analysis of the evolution of a team of medical researchers who are trying to establish a COIN consisting of patients of a chronic disease, family members of patients, doctors, and researchers. The data analysis is based on an e-mail archive consisting of the full mailboxes of the six project leaders covering...

Low-income and minority adolescents are at high risk for poor asthma outcomes, due in part to adherence. We tested acceptability, feasibility, and effect sizes of an adherence intervention for low socioeconomic status (SES) minority youth with moderate- and severe-persistent asthma. Design and Methods Single-site randomized pilot trial: interventio...

There is a need to explore feasible means of accruing an appropriate study cohort to help fill the knowledge gap between pharmacogenetic contributions to drug response and clinical application in the pediatric population. The aim of this study was to identify factors affecting recruitment of eligible subjects in pharmacogenetic studies at a large M...

The authors used the standardized response mean (SRM; the mean change score across children divided by the SD of the change scores) to evaluate responsiveness to clinical change using changes in parents' and patients' scores at a followup administration 3–9 months after baseline. The parent, patient, and physician ratings of disease course provided...

To estimate the prevalence of asthma among youth with types 1 and 2 diabetes and examine associations between asthma and glycemic control. This was a cross-sectional analysis of data from the SEARCH for Diabetes in Youth study, which included youth diagnosed with type 1 (n = 1683) and type 2 (n = 311) diabetes from 2002 through 2005. Asthma status...