Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet

The ImproveCareNow Network will take part in a $4 million research project to determine the optimal type and frequency of mindfulness-based treatment for managing stress. ImproveCareNow is one of 20 PCORI-funded Patient-Powered Research Networks (PPRNs) participating in this study, which will also demonstrate the capabilities of PCORnet, the National Patient-Centered Clinical Research Network.

The goal of medical research is to find answers that will improve the lives of patients. ImproveCareNow is committed to ensuring the research we support is answering the questions that matter most and will have the greatest potential to impact our community. During 2015, the ImproveCareNow community identified the most important areas where we should be focusing research. Through the Patient Priorities platform, suggestions were submitted for over 200 pediatric IBD research topics. This list was then refined and condensed to 22 unique potential research topics.

“A journey of a thousand miles begins with a single step” – Chinese philosopher Laozi, 6^th century BC

With great admiration, I have been witness to the strides that ImproveCareNow (ICN) has been making in our research efforts. As co-chair of the Research Committee, I am able to observe all of the wonderful ideas that the community puts forth for consideration. As with any learning curve, every step is not smooth, and we occasionally stumble and fall. Our colleagues are next to us ready to offer a helping hand though.

The variation in presentation of ulcerative colitis (UC) during childhood has been incompletely characterized. In October, at the NASPGHAN Annual Meeting, Dr. Jeremy Adler (@jeremyadlermd) presented an abstract on behalf of ImproveCareNow, which highlights the characterization of the extent of disease at presentation of UC in a large cohort of pediatric patients using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).

ImproveCareNow is being highlighted by the Agency for Healthcare Research and Quality (AHRQ). AHRQ previously provided funding to help create enhancements of the ImproveCareNow registry, including automated population management, pre-visit planning, Quality Improvement performance and data quality reports. The efforts of physicians, improvers, parents and patients are also highlighted.

Perianal disease is an important complication of Crohn’s disease in children. In May at Digestive Diseases Week 2015, a meeting of nearly 15,000 gastroenterologists from around the world, Dr. Jeremy Adler (@jeremyadlermd) presented research investigating instances of perianal disease (perianal fistulas, fissures and other perianal lesions) in pediatric Crohn’s disease, using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).

Using data from ICN2, Adler’s research team identified racial and regional differences in the development of perianal disease across multiple centers in the ImproveCareNow Network. Their research has shed light on when perianal disease most commonly occurs (early in pediatric Crohn’s disease) and suggests that early therapy should be aimed at fistula prevention. They concluded that the ICN2 registry is a valuable tool for population-based studies (like this one, which included data from many patients with IBD, across many different geographic areas), and suggest that more studies like this one be conducted to identify and evaluate preventative therapies for complications of Inflammatory Bowel Disease (like perianal disease).

This novel pediatric IBD research highlights the power of data, carefully collected and curated over time, to answer questions about complex conditions such as Crohn’s disease and ulcerative colitis and to shine light on ways we can work to improve the care and the health of patients in the near term.

ICN2 is the largest and fastest growing pediatric IBD registry in the world, with data from over 19,000 patients with IBD and 115,000 visits as of May 2015. The ImproveCareNow Network currently includes 75 participating pediatric IBD centers in 34 states and the District of Columbia and two in England, with nearly 45% of Crohn’s disease and ulcerative colitis patients cared for by US pediatric gastroenterologists. The purpose of ImproveCareNow is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network, enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. Data in the ImproveCareNow registry is used for improvement, research and innovation.

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Editor's note: The ImproveCareNow registry (ICN2) has grown dramatically over the past several years, and now, from the research standpoint, we are beginning to see the fruits of that labor. Jeremy Adler and colleagues have used the registry to carefully describe a specific phenotype of pediatric Crohn's disease across the network. We are only beginning to scratch the surface in utilizing not only the registry, but also the rich community network upon which ImproveCareNow is built. More and different types of research efforts are coming, and hopefully, the number of studies will continue to grow as quickly as the number of centers and patients have grown within the network.

Did you catch the article in HuffPost Health News about a large-scale comparison between the efficacy of Mindfulness Based Cognitive Therapy (MBCT) and anti-depressants?

This area, MBCT, is a growing interest of mine and I’m hoping to attend some trainings on it. I have informal training on mindfulness and use it myself, to great benefit! Here’s what I would say to someone else…

As a graduate student in a business school, I strive to apply what I’ve learned about management science to address problems of importance to society. So needless to say, working on research projects in partnership with the C3N Project and ImproveCareNow (ICN) has been educational and enlightening. Growth of the ImproveCareNow Network has brought both exciting opportunities and new practical challenges, as Sarah Myers discussed in her recent LOOP post. In the spirit of continuous improvement, ICN leaders wanted an enhanced, evidence-based understanding of Learning Labs and other models for collaboration at different levels of scale. And I was thrilled for the opportunity to support this effort.

Many of you will recall a survey distributed last summer by ImproveCareNow. The survey presented a series of questions with two scenarios for network-based group learning, asking respondents to choose the scenario which seemed most conducive to learning and improvement. Those paired scenarios appeared to be very similar; a few respondents even wrote to tell us that the survey was defective, presenting the same question over and over again! But, in fact we were using an advanced and efficient method, the discrete choice experiment (DCE), to collect feedback on strategies for continuous learning from within the network itself. Discrete choice methods – common in marketing research as well as health economics and policy studies – use experimental design to assess the relative importance that customers/end-users place on attributes of a given product, service, or scenario. For example, a DCE for the design of new laptop computers might examine factors such as weight, battery life, memory, and price. Comparison of patient treatment options with DCE might explore tradeoffs between efficacy, cost, and invasiveness.

Our DCE for ImproveCareNow evaluated three group learning techniques: micro-communities called “Learning Labs”, quality improvement curricula, and team-to-team mentoring. As a research team, we are extremely appreciative of the 149 survey respondents representing 63 ICN care centers. We had a response rate of 65%, increasing confidence that our results accurately represented network preferences.

Overall, we observed that ImproveCareNow participants preferred mixed Learning Labs (including both novice and experienced care teams) over cohorts of teams with similar levels of experience, sequential curriculum (introduction of topics in a structured succession) rather than a simultaneous overview of QI tools and interventions, and ad hoc mentoring based on focal topics rather than an assigned, permanent mentor team. We also observed interesting variation in preferences across subgroups based on individuals’ time in the network, professional roles, and characteristics of care centers such as patient population size. I am excited to share these results in greater detail – and most importantly, to discuss what we’ve learned with the ICN community – at the upcoming network-wide webinar on Tuesday May 12 (11 ET). Please join us to weigh in!

As improvement networks scale up, it is not enough to do more of the same in a bigger way… Understanding how to adapt structures for continuous learning as networks grow and change is necessary for development of learning health care systems. Engaging network participants to share their collective wisdom is essential for improving what ImproveCareNow does, and also for targeted improvements in costs, care, and outcomes.

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published by ImproveCareNow on behalf of Shannon Provost

Shannon M. Provost, MBA, is pursuing a PhD in Information, Risk, and Operations Management in the McCombs School of Business at the University of Texas at Austin and building a program of research around innovation ecosystems, social networks, and the science of improvement. She is also an Assistant Instructor of undergraduate business statistics. Shannon is grateful for learning opportunities which have emerged through her work as a visiting researcher at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center and as a member of the Institute for Healthcare Improvement faculty. Personal interests include travel, fashion, literature, beagles, and attempting to play golf.

Michael D. Kappelman, MD, MPH of the University of North Carolina at Chapel Hill (read the UNC press release here) and the ImproveCareNow Network has been awarded $7.9 million in funding from the Patient Centered Outcomes Research Institute (PCORI) to conduct a five year study comparing Anti-TNF Monotherapy versus Combination Therapy with Low Dose Methotrexate in Pediatric Crohn’s Disease.

The IBD Learning Priorities project was designed to give young adults, parents and clinicians in the IBD community a chance to ask the questions they felt were most important in the treatment of IBD. Using an online survey, families and clinicians submitted over 200 questions - or 'learning objectives'. Common themes included diet, diagnosis and individual care needs.

These questions will help us further understand what information those who are impacted by IBD really need. We expect to find some of these questions already have answers. And where there there is good research to answer these common questions, ImproveCareNow will work to develop and share this knowledge through family-centered tools and resources. Those questions that do not have complete answers will help prioritize future pediatric IBD research.

Below are a few examples of the learning objectives received from families and clinicians like you!

• Beyond enteral therapy, what is the role of diet in the maintenance of remission in IBD?

• Is 6mp safe? Will it hurt her liver anymore than it already is?

• We need more data on dual therapy with thiopurines and methotrexate. Specifically, will patients do better if these agents are started before starting biologics rather than starting them at the same time?

Stay connected with ImproveCareNow by joining our CIRCLE so we can send you updates on the continued progress of these important community-developed learning objectives and ensure you have access to the family-centered tools and information that are developed in response to some of these questions.