ImproveCareNow Network Research Articles

A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research.

Introduction:We collaborated with the ImproveCareNow Network to create a proof-of-concept architecture for a network-based Learning Health System. This collaboration involved transitioning an existing registry to one that is linked to the electronic health record (EHR), enabling a “data in once” strategy. We sought to automate a series of reports that support care improvement while also demonstrating the use of observational registry data for comparative effectiveness research.Description of Architecture:We worked with three leading EHR vendors to create EHR-based data collection forms. We automated many of ImproveCareNow’s analytic reports and developed an application for storing protected health information and tracking patient consent. Finally, we deployed a cohort identification tool to support feasibility studies and hypothesis generation.There is ongoing uptake of the system. To date, 31 centers have adopted the EHR-based forms and 21 centers are uploading data to the registry. Usage of the automated reports remains high and investigators have used the cohort identification tools to respond to several clinical trial requests.Suggestions for Future Use:The current process for creating EHR-based data collection forms requires groups to work individually with each vendor. A vendor-agnostic model would allow for more rapid uptake. We believe that interfacing network-based registries with the EHR would allow them to serve as a source of decision support. Additional standards are needed in order for this vision to be achieved, however.Conclusions:We have successfully implemented a proof-of-concept Learning Health System while providing a foundation on which others can build. We have also highlighted opportunities where sponsors could help accelerate progress.

Measuring quality of pediatric care: where we've been and where we're going.

It is a special privilege to receive an award that honors Doug Richardson, who was my attending physician during residency. He showed extraordinary dedication to his patients, his colleagues, and his trainees. I thought I would share my thoughts on quality measurement here not only because the care that Doug gave was of the highest quality but also because he believed in applying measurement to the delivery of health care1,2 and he encouraged me to view health services research as fundamental to improving children’s health. First, I will discuss why we measure quality. Then I will describe where the field was 2 decades ago when I first started working in it. I will then move on to where we are now, and finally, where I hope to see us go in the future. So, to begin, what do we use quality measurement for? First, quality measurement can help us improve quality. If we don’t know how we’re doing, we don’t know where we need to do better. Study after study has shown that measuring quality can lead to improving it.3–5 Quality measurement can also make us more accountable, as in public reporting and pay-for-performance, which are becoming more common around the country.5 Quality measurement can inform accreditation and certification processes.5 The Joint Commission, for example, has incorporated quality measures into its accreditation process and has found evidence suggestive that these measures might be leading to improvement.6 And quality measurement can answer critical research questions. It can elucidate disparities by race, ethnicity, income, and geography,7 and it can document the effects of policy changes and innovations, such as the development of Accountable Care Organizations. Back when I was first starting out, I worked on an analysis of published quality-of-care studies for … Address correspondence to Mark A. Schuster, MD, PhD, Division of General Pediatrics, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: mark.schuster{at}childrens.harvard.edu

320 Racial Differences in Initial Presentation and Early Treatment of Pediatric Crohn's Disease - Preliminary Results From the Improvecarenow Network

320 Racial Differences in Initial Presentation and Early Treatment of Pediatric Crohn's Disease - Preliminary Results From the Improvecarenow Network

Implementable Strategies and Exploratory Considerations to Reduce Costs Associated with Anti-TNF Therapy in Inflammatory Bowel Disease

A health care system is needed where care is based on the best available evidence and is delivered reliably, efficiently, and less expensively (best care at lower cost). In gastroenterology, anti-tumor necrosis factor agents represent the most effective medical therapeutic option for patients with moderate-to-severe inflammatory bowel disease (IBD), but are very expensive and account for nearly a quarter of the cost of IBD care, representing a major area of present and future impact in direct health care costs. The ImproveCareNow Network, consisting of over 55 pediatric IBD centers, seeks ways to improve the value of care in IBD, curtailing unnecessary costs and promoting better health outcomes through systematic and incremental quality improvement initiatives. This report summarizes the key evidence to facilitate the cost-effective use of anti-tumor necrosis factor agents for patients with IBD. Our review outlines the scientific rationale for initiating cost-reducing measures in anti-tumor necrosis factor use and focuses on 3 implementable strategies and 4 exploratory considerations through practical clinical guidelines, as supported by existing evidence. Implementable strategies can be readily integrated into today's daily practice, whereas exploratory considerations can guide research to support future implementation.

Variation in Infliximab Administration Practices in the Treatment of Pediatric Inflammatory Bowel Disease

Infliximab is used increasingly to treat inflammatory bowel disease (IBD). Infliximab is supplied in 100-mg vials. Doses that are typically calculated as 5 mg · kg⁻¹ · dose⁻¹ are commonly rounded up or down to the nearest 100 mg. Variation in dosing practices is unknown. Underdosing based on weight may increase the risk for disease exacerbation, whereas overimmune suppression could increase the risk of infection. Children may be at greater risk from dosage rounding. We aimed to characterize infliximab dosing practices, the use of corticosteroid premedication, and duration of infusions among pediatric practitioners participating in the ImproveCareNow Network, a national collaboration to improve IBD care and outcomes. A national survey of infliximab dosing practices was sent to 279 pediatric IBD practitioners from March to December 2011. Double data reconciliation, t test, and χ² analyses were performed. The response rate was 74% (N = 207). Thirty-eight percent (78/207) indicated that their practice has no uniform approach to the rounding of doses. Of 114 respondents indicating a uniform approach to rounding doses, 43% always round up to the nearest 100 mg, 33% always round up or down to the nearest 100 mg, and 14% never round doses. In addition, 28% of respondents always premedicate with corticosteroids and 12% never premedicate. Of respondents indicating "it depends," 95% premedicate if there has been a previous infusion reaction, 46% if there has been a prolonged lapse between treatment doses, 40% if antibodies to infliximab are present, and 11% if giving infliximab monotherapy. The duration of infusions is most often 2 hours, but varies between 1 and 4 hours. Wide variation exists in the practice of infliximab administration in pediatric IBD. The effect of these variations on outcomes is unknown.

Implementation of a registry for quality improvement

Presentation Crohns’ Disease and ulcerative colitis, or Inflammatory Bowel Disease (IBD), are rare in the pediatric population. Thus, conducting research centered on improving the quality of pediatric IBD care can be challenging for individual pediatric gastroenterology centers. By pooling data and sharing results across 35 care centers nationally, the ImproveCareNow network provides the opportunity for conducting quality improvement (QI) research aimed at improving care and outcomes for pediatric patients with IBD and their families [1]. The network serves as a platform for innovation and the establishment of evidencebased practices for IBD care. ImproveCareNow includes a registry database for clinical care, QI and research; a program to teach QI to each site’s QI team; and tools for QI interventions. The presentation at the Academy for Healthcare Improvement Methods meeting demonstrated how a registry can be a vital part of QI and QI research. The ImproveCareNow network uses the Model for Improvement to provide more reliable, pro-active care to pediatric patients with IBD [2]. Continuous improvement activities include examining registry data through detailed reports and acting appropriately based on these data. The centers receive monthly performance reports on 15 key clinical measures, a data quality report, and two population management reports. Control charts, benchmarking data, and care stratification data allow clinicians to identify high-risk patients and drill down to the patient level of analysis. The network also provides QI education and support, including monthly webinars, twice-yearly in-person learning sessions, and tools for effective system redesign. Network staff includes the network, scientific, and project directors, project manager, project coordinators, and QI consultants. Each center has its own QI team (physician leader, nurse leader, and improvement coordinator) that enrolls patients, enters data collected for each visit into a web-based database, and carries out QI activities to improve the site’s care delivery system. The network has demonstrated significant improvements in IBD remission rates, with approximately 75% of patients in remission in 2011 compared to 50% of patients in remission in 2007. The network recently received funding from the Agency for Healthcare Research and Quality (AHRQ) to enhance its capacity. Funding will facilitate the roll-out of innovative informatics techniques to automate data transfer from the electronic health record directly to the registry, which will eliminate the need for manual data entry. Automation will also improve data collection for QI activities, population management procedures, pre-visit planning, patientreported outcomes, comparative effectiveness research, and research focused on effectiveness of new biological agents to treat IBD. These informatics enhancements may reduce the time and personnel costs for the new centers anticipated to join a planned, larger sustainable network across 170 centers nationwide with over 50,000 patients. ImproveCareNow also received additional funding to create a Chronic Care Collaborative Network or C3N. The overall aim is to bring together stakeholders with the shared goal of improving patient self-management, clinical practice, and disease outcomes through innovative use of information technology and social media. Studying the value of the network, or how well it achieves better outcomes at lower costs, and conducting comparative effectiveness research are major priorities as the network moves toward becoming a C3N.

Role of Sex in the Treatment and Clinical Outcomes of Pediatric Patients With Inflammatory Bowel Disease

To examine sex differences in medical therapy and clinical outcomes in pediatric patients with inflammatory bowel disease (IBD). We performed a cross-sectional analysis of children with Crohn disease (CD) and ulcerative colitis (UC) using data from the ImproveCareNow Network collected between May 2007 and May 2010. Clinical remission, disease severity, body mass index (BMI) z scores, normal height velocity, and medication use were analyzed by sex and age. One thousand four hundred nine patients were included (993 had CD and 416 had UC). No significant sex differences were found in disease severity, BMI, height velocity, or use of medications. Further analysis of combination therapy with infliximab + 6-mercaptopurine/azathioprine and infliximab + methotrexate also did not reveal any differences. No sex differences were found after mediation use was stratified by age (those younger than 13 years and those 13 years old or older). In this sample of CD and UC pediatric patients, no significant sex differences were found in disease severity, BMI, height velocity, or medication use. Our data do not support the use of sex as a major factor in patient risk stratification for children with IBD. In addition, despite concerns for sex-specific complications of some medications, our analysis did not suggest any sex differences in medication use.

Improved Outcomes in a Quality Improvement Collaborative for Pediatric Inflammatory Bowel Disease

Unintended variation in the care of patients with Crohn disease (CD) and ulcerative colitis (UC) may prevent achievement of optimal outcomes. We sought to improve chronic care delivery and outcomes for children with inflammatory bowel disease by using network-based quality improvement methods. By using a modified Breakthrough Series collaborative structure, 6 ImproveCareNow Network care centers tested changes in chronic illness care and collected data monthly. We used an interrupted time series design to evaluate the impact of these changes. Data were available for 843 children with CD and 345 with UC. Changes in care delivery were associated with an increase in the proportion of visits with complete disease classification, measurement of thiopurine methyltransferase (TPMT) before initiation of thiopurines, and patients receiving an initial thiopurine dose appropriate to their TPMT status. These were significant in both populations for all process variables (P < .01) except for measurement of TPMT in CD patients (P = .12). There were significant increases in the proportion of CD (55%-68%) and UC (61%-72%) patients with inactive disease. There was also a significant increase in the proportion of CD patients not taking prednisone (86%-90%). Participating centers varied in the success of achieving these changes. Improvements in the outcomes of patients with CD and UC were associated with improvements in the process of chronic illness care. Variation in the success of implementing changes suggests the importance of overcoming organizational factors related to quality improvement success.

ImproveCareNow: The development of a pediatric inflammatory bowel disease improvement network

There is significant variation in diagnostic testing and treatment for inflammatory bowel disease. Quality improvement science methods can help address unwarranted variations in care and outcomes. The ImproveCareNow Network was established under the sponsorship of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the American Board of Pediatrics as a prototype for a model of improving subspecialty care that included three components: 1) creating enduring multicenter collaborative networks of pediatric subspecialists, 2) sharing of performance data collected in patient registries, and 3) training in quality improvement. The network began with a focus on improving initial diagnostic testing and evaluation, the classification of the severity and extent of disease, the detection and treatment of inadequate nutrition and growth, and the appropriate dosing of immunomodulator medications. Changes are based on an evidence-based model of chronic illness care involving the use of patient registries for population management, previsit planning, decision support, promoting self-management, and auditing of care processes. Currently, patients are being enrolled at 23 sites. Through 2009, data have been analyzed on over 2500 patients from over 7500 visits. Initial results suggest improvements in both care processes (e.g., appropriate medication dosing and completion of a classification bundle that includes the patient's diagnosis, disease activity, distribution and phenotype, growth status, and nutrition status) and outcomes (e.g., the percentage of patients in remission). These improvements suggest that practice sites are learning how to apply quality improvement methods to improve the care of patients.