Peter Margolis - Academia.edu (original) (raw)

Papers by Peter Margolis

Research paper thumbnail of The learning health system for pediatric nephrology: building better systems to improve health

Pediatric Nephrology

Learning health systems (LHS) align science, informatics, incentives, and culture for continuous ... more Learning health systems (LHS) align science, informatics, incentives, and culture for continuous improvement and innovation. In this organizational system, best practices are seamlessly embedded in the delivery process, and new knowledge is captured as an integral byproduct of the care delivery experience aimed to transform clinical practice and improve patient outcomes. The objective of this review is to describe how building better health systems that integrate clinical care, improvement, and research as part of an LHS can improve care within pediatric nephrology. This review will provide real-world examples of how this system can be established in a single center and across multiple centers as learning health networks.

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

JMIR human factors, Jan 22, 2018

Our health care system fails to deliver necessary results, and incremental system improvements wi... more 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. 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. 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. Over 100 people participated in the design process that resulted in (1) an o...

Research paper thumbnail of Learning Health Systems as Facilitators of Precision Medicine

Clinical Pharmacology & Therapeutics, 2017

Research paper thumbnail of Su1013 EVALUATION OF INSURANCE TYPE ON PRIOR AUTHORIZATION (PA) DELAYS IN PEDIATRIC INFLAMMATORY BOWEL DISEASE (IBD) PATIENTS PRESCRIBED BIOLOGIC THERAPIES

Research paper thumbnail of Sustainable generation of patient‐led resources in a learning health system

Learning Health Systems, 2021

Patient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and f... more 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.

Research paper thumbnail of Towards Growing a COIN in a Medical Research Community

Procedia - Social and Behavioral Sciences, 2011

In this paper we describe a longitudinal analysis of the evolution of a team of medical researche... more 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 the whole period of COIN formation. We conducted a dynamic analysis of the e-mail network looking at social network analysis metrics such as betweenness centrality and density over time, as well as contribution index and core/periphery structure. We also did a semantic analysis of the e-mail subject headings. A netnographic analysis of patients was done through analyzing their Facebook friendship and discussion networks. External perception of team effectiveness was done through a Web buzz analysis. Preliminary results indicate that after the first physical meeting of the full team the betweenness centrality of the official leaders went down noticeably, as tasks were delegated to other team members, whose centrality increased as the leaders' centrality fell. The patients, who are the main constituency of this project and could contribute invaluable advise, are still surprisingly peripheral in the entire project team and have a low contribution index. We also found that a peripheral position was held by some very senior team members who seem focused almost exclusively on external projects, and are (not yet) well connected to the core of the project team. The team seems to be inwardly focused, engaged in internal coordination activities and scarcely involved in managing across boundaries. To increase the success of COIN formation, the team might need to extend their ties to the peripheral patients and senior members, whose specialized expertise is essential to disseminate knowledge outside of the team boundaries.

Research paper thumbnail of Coolfarming Lessons from the Beehive to Increase Organizational Creativity

SSRN Electronic Journal, 2014

This paper introduces Collaborative Innovation Networks as an engine for selforganizing disruptiv... more This paper introduces Collaborative Innovation Networks as an engine for selforganizing disruptive innovation. It is illustrated by the metaphor of the bee swarm through four lessons from the beehive: "centralized leadership-rotating leaderswaggle dance-attraction pheromone" as key principles for managing selforganizing teams of creators. In combination with applying social network analysis through knowledge flow optimization, managers get a powerful new tool to radically increase creativity and performance of their organizations. Among many well-known examples (LEGO Mindstorms, Apple, Wikipedia), the paper also introduces an extensive case study in health are, the C3N project which creates Collaborative Care Networks for patients of chronic diseases.

Research paper thumbnail of Collaborative Chronic Care Networks (C3Ns) to Transform Chronic Illness Care

Pediatrics, 2013

Despite significant gains by pediatric collaborative improvement networks, the overall US system ... more 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 distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of “operating systems” on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation desig...

Research paper thumbnail of Serious infections in young infants in developing countries

Research paper thumbnail of Variation in Care in Pediatric Crohn Disease

Journal of Pediatric Gastroenterology & Nutrition, 2009

Research paper thumbnail of Practice based education to improve delivery systems for prevention in primary care: randomised trial

Research paper thumbnail of Antibiotics prior to age 2 years have limited association with preschool growth trajectory

International Journal of Obesity, 2022

Prior studies of early antibiotic use and growth have shown mixed results, primarily on cross-sec... more Prior studies of early antibiotic use and growth have shown mixed results, primarily on cross-sectional outcomes. This study examined the effect of oral antibiotics before age 24 months on growth trajectory at age 2–5 years. We captured oral antibiotic prescriptions and anthropometrics from electronic health records through PCORnet, for children with ≥1 height and weight at 0–12 months of age, ≥1 at 12–30 months, and ≥2 between 25 and 72 months. Prescriptions were grouped into episodes by time and by antimicrobial spectrum. Longitudinal rate regression was used to assess differences in growth rate from 25 to 72 months of age. Models were adjusted for sex, race/ethnicity, steroid use, diagnosed asthma, complex chronic conditions, and infections. 430,376 children from 29 health U.S. systems were included, with 58% receiving antibiotics before 24 months. Exposure to any antibiotic was associated with an average 0.7% (95% CI 0.5, 0.9, p < 0.0001) greater rate of weight gain, corresponding to 0.05 kg additional weight. The estimated effect was slightly greater for narrow-spectrum (0.8% [0.6, 1.1]) than broad-spectrum (0.6% [0.3, 0.8], p < 0.0001) drugs. There was a small dose response relationship between the number of antibiotic episodes and weight gain. Oral antibiotic use prior to 24 months of age was associated with very small changes in average growth rate at ages 2–5 years. The small effect size is unlikely to affect individual prescribing decisions, though it may reflect a biologic effect that can combine with others.

Research paper thumbnail of Networked health care: Rethinking value creation in learning health care systems

Learning Health Systems

Creating better value in health care service today is very challenging. The social pressure to do... more 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 those activities in health care systems that are similar, this model may be very helpful. Attempts to "install" the value chain widely in health care systems have, however, been frustrating. As a result, well-meaning leaders seeking better value have resorted to programs of cost reduction, rather than service redesign. Professionals have not been very happy or willing participants. The work of health care service invites an expanded model of value creation, one that better matches the work. This paper proposes a networked architecture that can mobilize and integrate the resources of health care professionals, interested patients, family, and other community members in the delivery and improvement of health care systems. It also suggests how this value-creation architecture might contribute to research and the development of new knowledge. Two cases illustrate the proposed architecture and its implications for system design and practice, technology development, and roles and responsibilities of all actors involved in health care systems. We believe that this model better fits the need of making and improving health care services. This expanded understanding of how value is created invites attention by senior leaders, by those attempting to facilitate the improvement of current systems, by patients and clinicians involved in the daily work of health care service coproduction, by those charged with the preparation and formation of future professionals, by those who measure and conduct research in health care services, and by those leading policy, payment, and reimbursement systems.

Research paper thumbnail of Implementing a Novel Quality Improvement-Based Approach to Data Quality Monitoring and Enhancement in a Multipurpose Clinical Registry

eGEMs (Generating Evidence & Methods to improve patient outcomes)

Objective: To implement a quality improvement based system to measure and improve data quality in... more Objective: To implement a quality improvement based system to measure and improve data quality in an observational clinical registry to support a Learning Healthcare System. Data Source: ImproveCareNow Network registry, which as of September 2019 contained data from 314,250 visits of 43,305 pediatric Inflammatory Bowel Disease (IBD) patients at 109 participating care centers. Study Design: The impact of data quality improvement support to care centers was evaluated using statistical process control methodology. Data quality measures were defined, performance feedback of those measures using statistical process control charts was implemented, and reports that identified data items not following data quality checks were developed to enable centers to monitor and improve the quality of their data. Principal Findings: There was a pattern of improvement across measures of data quality. The proportion of visits with complete critical data increased from 72 percent to 82 percent. The percent of registered patients improved from 59 percent to 83 percent. Of three additional measures of data consistency and timeliness, one improved performance from 42 percent to 63 percent. Performance declined on one measure due to changes in network documentation practices and maturation. There was variation among care centers in data quality. Conclusions: A quality improvement based approach to data quality monitoring and improvement is feasible and effective.

Research paper thumbnail of Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network

Cardiology in the Young

Optimising short- and long-term outcomes for children and patients with CHD depends on continued ... more Optimising short- and long-term outcomes for children and patients with CHD depends on continued scientific discovery and translation to clinical improvements in a coordinated effort by multiple stakeholders. Several challenges remain for clinicians, researchers, administrators, patients, and families seeking continuous scientific and clinical advancements in the field. We describe a new integrated research and improvement network – Cardiac Networks United – that seeks to build upon the experience and success achieved to-date to create a new infrastructure for research and quality improvement that will serve the needs of the paediatric and congenital heart community in the future. Existing gaps in data integration and barriers to improvement are described, along with the mission and vision, organisational structure, and early objectives of Cardiac Networks United. Finally, representatives of key stakeholder groups – heart centre executives, research leaders, learning health system e...

Research paper thumbnail of Accuracy of the medication list in the electronic health record-implications for care, research, and improvement

Journal of the American Medical Informatics Association : JAMIA, Jan 15, 2018

Electronic medication lists may be useful in clinical decision support and research, but their ac... more Electronic medication lists may be useful in clinical decision support and research, but their accuracy is not well described. Our aim was to assess the completeness of the medication list compared to the clinical narrative in the electronic health record. We reviewed charts of 30 patients with inflammatory bowel disease (IBD) from each of 6 gastroenterology centers. Centers compared IBD medications from the medication list to the clinical narrative. We reviewed 379 IBD medications among 180 patients. There was variation by center, from 90% patients with complete agreement between the medication list and clinical narrative to 50% agreement. There was a range in the accuracy of the medication list compared to the clinical narrative. This information may be helpful for sites seeking to improve data quality and those seeking to use medication list data for research or clinical decision support.

Research paper thumbnail of A Guide to Gutsy Living": Patient-Driven Development of a Pediatric Ostomy Toolkit

Research paper thumbnail of Digital Social Network Analysis as a Strategy for Understanding Variation in the Participation of Patients in Healthcare Quality Improvement

Research paper thumbnail of Quality Items Required for Running a Paediatric Inflammatory Bowel Disease Centre: An ECCO Paper

Journal of Crohn's & colitis, 2017

The importance of a holistic approach with a comprehensive multidisciplinary team, including nutr... more The importance of a holistic approach with a comprehensive multidisciplinary team, including nutritional and psychosocial support, is becoming well recognised as a key contributor to optimal care in paediatric inflammatory bowel disease [IBD]. The Paediatric committee of ECCO [P-ECCO] aimed to determine important components that would contribute to quality of care in a paediatric IBD centre [henceforth 'quality items']. First, a list of items has been generated by a Delphi group of 111 international paediatric IBD experts. Through an iterative process, the group graded and ranked the items according to their perceived relative contribution to quality care. We then surveyed 101 paediatric IBD centres affiliated with the Porto and Interest groups of ESPGHAN in Europe and with the ImproveCareNow registry in North America, exploring the availability of the retained items in their centres. A total of 68 items were generated and reduced to a list of 60 ranked order items, grouped ...

Research paper thumbnail of Coughing, sneezing, and aching online: Twitter and the volume of influenza-like illness in a pediatric hospital

PloS one, 2017

This study investigates the relation of the incidence of georeferenced tweets related to respirat... more This study investigates the relation of the incidence of georeferenced tweets related to respiratory illness to the incidence of influenza-like illness (ILI) in the emergency department (ED) and urgent care clinics (UCCs) of a large pediatric hospital. We collected (1) tweets in English originating in our hospital's primary service area between 11/1/2014 and 5/1/2015 and containing one or more specific terms related to respiratory illness and (2) the daily number of patients presenting to our hospital's EDs and UCCs with ILI, as captured by ICD-9 codes. A Support Vector Machine classifier was applied to the set of tweets to remove those unlikely to be related to ILI. Time series of the pooled set of remaining tweets involving any term, of tweets involving individual terms, and of the ICD-9 data were constructed, and temporal cross-correlation between the social media and clinical data was computed. A statistically significant correlation (Spearman ρ = 0.23) between tweets in...

Research paper thumbnail of The learning health system for pediatric nephrology: building better systems to improve health

Pediatric Nephrology

Learning health systems (LHS) align science, informatics, incentives, and culture for continuous ... more Learning health systems (LHS) align science, informatics, incentives, and culture for continuous improvement and innovation. In this organizational system, best practices are seamlessly embedded in the delivery process, and new knowledge is captured as an integral byproduct of the care delivery experience aimed to transform clinical practice and improve patient outcomes. The objective of this review is to describe how building better health systems that integrate clinical care, improvement, and research as part of an LHS can improve care within pediatric nephrology. This review will provide real-world examples of how this system can be established in a single center and across multiple centers as learning health networks.

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

JMIR human factors, Jan 22, 2018

Our health care system fails to deliver necessary results, and incremental system improvements wi... more 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. 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. 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. Over 100 people participated in the design process that resulted in (1) an o...

Research paper thumbnail of Learning Health Systems as Facilitators of Precision Medicine

Clinical Pharmacology & Therapeutics, 2017

Research paper thumbnail of Su1013 EVALUATION OF INSURANCE TYPE ON PRIOR AUTHORIZATION (PA) DELAYS IN PEDIATRIC INFLAMMATORY BOWEL DISEASE (IBD) PATIENTS PRESCRIBED BIOLOGIC THERAPIES

Research paper thumbnail of Sustainable generation of patient‐led resources in a learning health system

Learning Health Systems, 2021

Patient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and f... more 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.

Research paper thumbnail of Towards Growing a COIN in a Medical Research Community

Procedia - Social and Behavioral Sciences, 2011

In this paper we describe a longitudinal analysis of the evolution of a team of medical researche... more 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 the whole period of COIN formation. We conducted a dynamic analysis of the e-mail network looking at social network analysis metrics such as betweenness centrality and density over time, as well as contribution index and core/periphery structure. We also did a semantic analysis of the e-mail subject headings. A netnographic analysis of patients was done through analyzing their Facebook friendship and discussion networks. External perception of team effectiveness was done through a Web buzz analysis. Preliminary results indicate that after the first physical meeting of the full team the betweenness centrality of the official leaders went down noticeably, as tasks were delegated to other team members, whose centrality increased as the leaders' centrality fell. The patients, who are the main constituency of this project and could contribute invaluable advise, are still surprisingly peripheral in the entire project team and have a low contribution index. We also found that a peripheral position was held by some very senior team members who seem focused almost exclusively on external projects, and are (not yet) well connected to the core of the project team. The team seems to be inwardly focused, engaged in internal coordination activities and scarcely involved in managing across boundaries. To increase the success of COIN formation, the team might need to extend their ties to the peripheral patients and senior members, whose specialized expertise is essential to disseminate knowledge outside of the team boundaries.

Research paper thumbnail of Coolfarming Lessons from the Beehive to Increase Organizational Creativity

SSRN Electronic Journal, 2014

This paper introduces Collaborative Innovation Networks as an engine for selforganizing disruptiv... more This paper introduces Collaborative Innovation Networks as an engine for selforganizing disruptive innovation. It is illustrated by the metaphor of the bee swarm through four lessons from the beehive: "centralized leadership-rotating leaderswaggle dance-attraction pheromone" as key principles for managing selforganizing teams of creators. In combination with applying social network analysis through knowledge flow optimization, managers get a powerful new tool to radically increase creativity and performance of their organizations. Among many well-known examples (LEGO Mindstorms, Apple, Wikipedia), the paper also introduces an extensive case study in health are, the C3N project which creates Collaborative Care Networks for patients of chronic diseases.

Research paper thumbnail of Collaborative Chronic Care Networks (C3Ns) to Transform Chronic Illness Care

Pediatrics, 2013

Despite significant gains by pediatric collaborative improvement networks, the overall US system ... more 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 distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of “operating systems” on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation desig...

Research paper thumbnail of Serious infections in young infants in developing countries

Research paper thumbnail of Variation in Care in Pediatric Crohn Disease

Journal of Pediatric Gastroenterology & Nutrition, 2009

Research paper thumbnail of Practice based education to improve delivery systems for prevention in primary care: randomised trial

Research paper thumbnail of Antibiotics prior to age 2 years have limited association with preschool growth trajectory

International Journal of Obesity, 2022

Prior studies of early antibiotic use and growth have shown mixed results, primarily on cross-sec... more Prior studies of early antibiotic use and growth have shown mixed results, primarily on cross-sectional outcomes. This study examined the effect of oral antibiotics before age 24 months on growth trajectory at age 2–5 years. We captured oral antibiotic prescriptions and anthropometrics from electronic health records through PCORnet, for children with ≥1 height and weight at 0–12 months of age, ≥1 at 12–30 months, and ≥2 between 25 and 72 months. Prescriptions were grouped into episodes by time and by antimicrobial spectrum. Longitudinal rate regression was used to assess differences in growth rate from 25 to 72 months of age. Models were adjusted for sex, race/ethnicity, steroid use, diagnosed asthma, complex chronic conditions, and infections. 430,376 children from 29 health U.S. systems were included, with 58% receiving antibiotics before 24 months. Exposure to any antibiotic was associated with an average 0.7% (95% CI 0.5, 0.9, p < 0.0001) greater rate of weight gain, corresponding to 0.05 kg additional weight. The estimated effect was slightly greater for narrow-spectrum (0.8% [0.6, 1.1]) than broad-spectrum (0.6% [0.3, 0.8], p < 0.0001) drugs. There was a small dose response relationship between the number of antibiotic episodes and weight gain. Oral antibiotic use prior to 24 months of age was associated with very small changes in average growth rate at ages 2–5 years. The small effect size is unlikely to affect individual prescribing decisions, though it may reflect a biologic effect that can combine with others.

Research paper thumbnail of Networked health care: Rethinking value creation in learning health care systems

Learning Health Systems

Creating better value in health care service today is very challenging. The social pressure to do... more 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 those activities in health care systems that are similar, this model may be very helpful. Attempts to "install" the value chain widely in health care systems have, however, been frustrating. As a result, well-meaning leaders seeking better value have resorted to programs of cost reduction, rather than service redesign. Professionals have not been very happy or willing participants. The work of health care service invites an expanded model of value creation, one that better matches the work. This paper proposes a networked architecture that can mobilize and integrate the resources of health care professionals, interested patients, family, and other community members in the delivery and improvement of health care systems. It also suggests how this value-creation architecture might contribute to research and the development of new knowledge. Two cases illustrate the proposed architecture and its implications for system design and practice, technology development, and roles and responsibilities of all actors involved in health care systems. We believe that this model better fits the need of making and improving health care services. This expanded understanding of how value is created invites attention by senior leaders, by those attempting to facilitate the improvement of current systems, by patients and clinicians involved in the daily work of health care service coproduction, by those charged with the preparation and formation of future professionals, by those who measure and conduct research in health care services, and by those leading policy, payment, and reimbursement systems.

Research paper thumbnail of Implementing a Novel Quality Improvement-Based Approach to Data Quality Monitoring and Enhancement in a Multipurpose Clinical Registry

eGEMs (Generating Evidence & Methods to improve patient outcomes)

Objective: To implement a quality improvement based system to measure and improve data quality in... more Objective: To implement a quality improvement based system to measure and improve data quality in an observational clinical registry to support a Learning Healthcare System. Data Source: ImproveCareNow Network registry, which as of September 2019 contained data from 314,250 visits of 43,305 pediatric Inflammatory Bowel Disease (IBD) patients at 109 participating care centers. Study Design: The impact of data quality improvement support to care centers was evaluated using statistical process control methodology. Data quality measures were defined, performance feedback of those measures using statistical process control charts was implemented, and reports that identified data items not following data quality checks were developed to enable centers to monitor and improve the quality of their data. Principal Findings: There was a pattern of improvement across measures of data quality. The proportion of visits with complete critical data increased from 72 percent to 82 percent. The percent of registered patients improved from 59 percent to 83 percent. Of three additional measures of data consistency and timeliness, one improved performance from 42 percent to 63 percent. Performance declined on one measure due to changes in network documentation practices and maturation. There was variation among care centers in data quality. Conclusions: A quality improvement based approach to data quality monitoring and improvement is feasible and effective.

Research paper thumbnail of Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network

Cardiology in the Young

Optimising short- and long-term outcomes for children and patients with CHD depends on continued ... more Optimising short- and long-term outcomes for children and patients with CHD depends on continued scientific discovery and translation to clinical improvements in a coordinated effort by multiple stakeholders. Several challenges remain for clinicians, researchers, administrators, patients, and families seeking continuous scientific and clinical advancements in the field. We describe a new integrated research and improvement network – Cardiac Networks United – that seeks to build upon the experience and success achieved to-date to create a new infrastructure for research and quality improvement that will serve the needs of the paediatric and congenital heart community in the future. Existing gaps in data integration and barriers to improvement are described, along with the mission and vision, organisational structure, and early objectives of Cardiac Networks United. Finally, representatives of key stakeholder groups – heart centre executives, research leaders, learning health system e...

Research paper thumbnail of Accuracy of the medication list in the electronic health record-implications for care, research, and improvement

Journal of the American Medical Informatics Association : JAMIA, Jan 15, 2018

Electronic medication lists may be useful in clinical decision support and research, but their ac... more Electronic medication lists may be useful in clinical decision support and research, but their accuracy is not well described. Our aim was to assess the completeness of the medication list compared to the clinical narrative in the electronic health record. We reviewed charts of 30 patients with inflammatory bowel disease (IBD) from each of 6 gastroenterology centers. Centers compared IBD medications from the medication list to the clinical narrative. We reviewed 379 IBD medications among 180 patients. There was variation by center, from 90% patients with complete agreement between the medication list and clinical narrative to 50% agreement. There was a range in the accuracy of the medication list compared to the clinical narrative. This information may be helpful for sites seeking to improve data quality and those seeking to use medication list data for research or clinical decision support.

Research paper thumbnail of A Guide to Gutsy Living": Patient-Driven Development of a Pediatric Ostomy Toolkit

Research paper thumbnail of Digital Social Network Analysis as a Strategy for Understanding Variation in the Participation of Patients in Healthcare Quality Improvement

Research paper thumbnail of Quality Items Required for Running a Paediatric Inflammatory Bowel Disease Centre: An ECCO Paper

Journal of Crohn's & colitis, 2017

The importance of a holistic approach with a comprehensive multidisciplinary team, including nutr... more The importance of a holistic approach with a comprehensive multidisciplinary team, including nutritional and psychosocial support, is becoming well recognised as a key contributor to optimal care in paediatric inflammatory bowel disease [IBD]. The Paediatric committee of ECCO [P-ECCO] aimed to determine important components that would contribute to quality of care in a paediatric IBD centre [henceforth 'quality items']. First, a list of items has been generated by a Delphi group of 111 international paediatric IBD experts. Through an iterative process, the group graded and ranked the items according to their perceived relative contribution to quality care. We then surveyed 101 paediatric IBD centres affiliated with the Porto and Interest groups of ESPGHAN in Europe and with the ImproveCareNow registry in North America, exploring the availability of the retained items in their centres. A total of 68 items were generated and reduced to a list of 60 ranked order items, grouped ...

Research paper thumbnail of Coughing, sneezing, and aching online: Twitter and the volume of influenza-like illness in a pediatric hospital

PloS one, 2017

This study investigates the relation of the incidence of georeferenced tweets related to respirat... more This study investigates the relation of the incidence of georeferenced tweets related to respiratory illness to the incidence of influenza-like illness (ILI) in the emergency department (ED) and urgent care clinics (UCCs) of a large pediatric hospital. We collected (1) tweets in English originating in our hospital's primary service area between 11/1/2014 and 5/1/2015 and containing one or more specific terms related to respiratory illness and (2) the daily number of patients presenting to our hospital's EDs and UCCs with ILI, as captured by ICD-9 codes. A Support Vector Machine classifier was applied to the set of tweets to remove those unlikely to be related to ILI. Time series of the pooled set of remaining tweets involving any term, of tweets involving individual terms, and of the ICD-9 data were constructed, and temporal cross-correlation between the social media and clinical data was computed. A statistically significant correlation (Spearman ρ = 0.23) between tweets in...