IBD Qorus: Quality driven. Care focused.

The Crohn's & Colitis Foundation's two-part mission supports innovative research for cures for IBD -- while doing everything we can to improve the patient's daily quality of life. Our rapidly expanding, national initiative focused on improving patient quality of care speaks powerfully to the latter objective: IBD Qorus is a groundbreaking collaboration between patients and their healthcare providers that will lead to enhanced patient health outcomes for those living with IBD.

Jessica Caron is one of five patient leaders collaborating in the development and implementation of IBD Qorus, providing critical input and guidance to help create the initiative's model of co-production IBD care. "In Qorus, my voice -- a patient's point of view -- is just as important and respected as those of the doctors and researchers working together to establish the priorities and create the tools for the program," she explains. "If something won't make sense to an IBD patient, I challenge it and suggest alternatives. What's incredible is that the doctors aren't just open to my feedback and ideas, they welcome them!"

Our Commitment to IBD Quality of Care

A number of recent studies have shown a significant degree of variation in how physicians across the country diagnose and treat IBD. We know quality of care directly impacts the health and treatment outcomes for patients. While improving this won't cure a patient's disease, it can help mitigate some of the risks associated with IBD care and preventable complications.

"The success of your IBD treatment shouldn't depend on which doctor you see," notes Caren Heller, MD, MBA, the Foundation's Chief Scientific Officer, who has focused on these issues throughout her career. "We have more effective treatments now, and should be using them to the very best of our abilities and capacities to improve patient quality of life." What is today IBD Qorus began when a group of dedicated physicians and researchers was convened to address variations in the care of adult patients. This Quality of Care Committee first identified and prioritized key treatment processes and patient outcomes -- the fundamental first step in the development of any quality of care effort: Once defined, outcomes can be measured to form a baseline against which a patient's progress can be tracked over time. The committee also established the mission that continues to guide IBD Qorus: To improve the quality of care delivered to patients with IBD.

Corey Siegel, MD, Director of the Dartmouth-Hitchcock Inflammatory Bowel Disease Center, and Gil Melmed, MD, Director of Clinical Inflammatory Bowel Disease at Cedars-Sinai Medical Center, serve as co-chairs of IBD Qorus. "The critical word in our mission is delivered," Dr. Siegel stresses. "As healthcare providers, we can focus too narrowly on the disease, and lose sight of the individual patient we're trying to help. We must listen and be guided by what's important to each patient, to preserve or improve his or her quality of life. This collaboration between doctor and patient, or treatment as co-production, is the cornerstone of Qorus."

In developing IBD Qorus, our aim is to establish a collaborative chronic care network for IBD that empowers healthcare providers to share ideas and report quality metrics using a common platform so that results can be compared over time and across a variety of care settings (e.g., university and community-based academic medical centers, small faculty practices, large community private practices, etc.). In turn, participating providers will receive coached performance feedback and learn from one another to improve their levels of IBD care.

Last year, this program was formally dubbed IBD Qorus (a variation of "chorus," to signify its goal of bringing together many voices and perspectives to form a more harmonious and stronger whole), and a dedicated team began to implement a phased, three-year plan to expand the initiative to 30 diverse sites, treating a total of approximately 30,000 adult IBD patients. Each site includes a physician lead in addition to a quality of care team focused on Qorus. Here are the current sites as well as the second cohort of sites and physician leaders.

A Learning Health System for IBD

The conceptual basis for IBD Qorus comes from work developed by The Dartmouth Institute (TDI) for Health Policy and Clinical Practices. TDI is consulting with IBD Qorus leaders to create a "learning health system" for IBD that incorporates quality improvement methodology. This will measure and improve quality of life for adult patients by enabling symptom tracking, self-management, and shared decision-making between patient and provider as well as facilitating their communication during and between visits.

Led by the IBD Qorus team, TDI and Deloitte Consulting are designing and testing the technology architecture that will enable collection of this data, and establish a rapid knowledge-sharing environment through streamlined patient-provider interactions at the point of care. When fully developed, IBD Qorus' technology platform will enable data analysis and patient population management, and will allow participants to look at their own data on a continuous basis.

Patient-reported outcomes, concerns, and disease activity assessments will be integrated into a comprehensive, patient-centered tool, or dashboard, to help inform decision-making and promote patient-provider co-production of treatment. Additionally, findings from each participating site will be reviewed and analyzed at a macro level. Organized data and other information will be shared to rapidly spread ideas and help in the assessment of best practices.

IBD Qorus Co-Chair Dr. Gil Melmed explains how the dashboard will be useful to physicians. "Let's say I want to identify all of my patients who have active symptoms and who have been on steroids for longer than three months, so I can figure out who might need attention sooner rather than later and proactively contact them to see how they're doing," he posits. "Right now, I have no way to sort my practice by these parameters in real time. But with simplified access to powerful population management tools, I can quickly identify those that are in need of more attention, and potentially intervene early. In addition, these tools can help researchers identify patterns and trends in treatment outcomes across thousands of patients. The dashboard and population management tools have the capacity to influence how we approach and improve IBD care for the patient in front of us, as well as for large populations of patients around the country."

In addition, as the healthcare provider-facing aspect of the Foundation's broader IBD Plexus® initiative, IBD Qorus will enable researchers to integrate, compare, and analyze quality of care data with the scientific and patient-reported data from Plexus' research- and patient-facing aspects. This synergizing capability, made possible by IBD Plexus' single, powerful, large data management platform, will spur novel research studies to rapidly advance the identification of better treatments and, ultimately, cures for IBD.

IBD Qorus Quality Improvement Methods

While its essential components and technology infrastructure are being developed, IBD Qorus sites are working with the Institute for Healthcare Improvement (IHI) to better apply what we already know about improving IBD health outcomes -- knowledge that often fails to influence or improve day-to-day clinical practice. IHI's "Breakthrough Series" (BTS) bridges that gap between sound science and its practical application to care delivery by creating a structure within which participants can easily learn from each other, as well as from recognized experts, in key topic areas where they want to make improvements. The collaborative BTS model is organized into a series of cycles, with each cycle kicked off by an in-person "learning session" and follow-up "action period."

The inaugural BTS for IBD Qorus focuses on urgent care needs, an area that is an important but under-recognized quality of care issue in IBD. After training in quality improvement (QI) methodology and application, patients and providers met in a learning session to share their experiences, challenges, and innovations, and to learn from QI experts. During the follow-up action period, sites focused on measuring and improving various drivers of access to urgent care. Each developed specific aims and began using customized data-collection tools to measure their progress over time. Monthly calls enabled sites to learn, share, and further develop their expertise in QI methods.

Throughout the BTS cycles, IBD Qorus sites constantly refine these efforts, tweaking their measures as needed, and continuously learning from the innovations and experiences of other sites. Overall findings are then disseminated through presentations and publications to more broadly impact and improve the quality of IBD care.

Another step in this process is the development of care pathways. Pathways define the sequence as a patient moves from screening to evaluation to intervention to follow-up. IBD physicians and experts in clinical care pathway development, as well as related experts, have come together to articulate the best process for care modules designed to streamline and standardize an approach to specific areas within IBD management. Nutrition and anemia are two care pathways currently under development, with other topics to follow. Care pathways will be iteratively tested at IBD Qorus sites, with data gathered through the Qorus platform that will yield new insights and information to improve IBD care across the Qorus network and beyond.

The Promise of IBD Qorus

As we continue our evolution and expansion of IBD Qorus, there is urgency to our efforts: The Affordable Care Act's National Healthcare Reform Initiative mandates more consistent and desirable outcomes for patients -- a goal which can only be achieved by the kind of comprehensive, systematic initiative represented by IBD Qorus. Ultimately, the groundbreaking initiative will play a vital role in defining and disseminating the highest standards of care for IBD, and supporting providers in delivering -- and continuously improving -- that quality of care.

In addition, IBD Qorus-generated data and findings will contribute to the development of healthcare policies and strategies impacting IBD care worldwide. The result may yield greater efficiencies and a reduction of costs in healthcare management. For example, our initial BTS not only improves patients' experience receiving urgent care, but will also help them avoid expensive and potentially harmful emergency treatment in the first place.

"IBD Qorus represents our passionate commitment to improving IBD patients' quality of life," concludes Dr. Heller. "Until we find cures, Qorus will enable revolutionary, positive change in the way IBD care is delivered, and better health outcomes for every patient."

This research program is made possible by support from: