IMAGINE Impact Stories: Four ways the IMAGINE Network is leading the way in quality care, policy, and knowledge translation.
PACE: Advancing Quality Improvement for Inflammatory Bowel Disease (IBD)
As part of the IMAGINE Network’s collaboration with Crohn’s & Colitis Canada and the Canadian Association of Gastroenterology (CAG), researchers developed PACE: A Quality Improvement initiative for patients with inflammatory bowel disease (IBD). In the past year, a consensus process was conducted with Canadian IBD experts and patient-input to establish a list of 45 quality indicators (QIs). A quality indicator is essentially a “yardstick” against which an IBD clinic can assess the quality of its care delivery. The list of QIs established will be implemented across five IBD Centres of Excellence. This list of QIs will also be made available to other IBD centres across Canada, as well as community gastroenterology practices, to ensure that the maximum possible number of Canadians living with IBD have access to an acceptable standard of care. The manuscript on the quality indicators has been accepted for publication in a peer reviewed journal and will be published later in 2018.
In a related project, the QIs developed have also been used to help design a Global Rating Scale (GRS) tool for IBD. The IBD GRS is a web-based tool that will serve as a type of scorecard, giving a clinic the ability to evaluate its performance against standardized metrics, and highlight areas of care delivery that could be improved upon. The tool is currently in development, and is expected to be available through the Canadian Association of Gastroenterology’s (CAG) website by the end of 2018. More than 1,000 gastroenterologists, surgeons, pediatricians and nurses, who make up CAG’s membership, will have access to the IBD GRS. The manuscript describing the development of the IBD GRS tool has been drafted and will be published in a peer-reviewed journal later in 2018. Focus groups with IBD patients were completed in Toronto, Calgary and Montreal. The themes extracted from the focus groups were incorporated into the quality indicators and the IBD GRS tool. The creation of the web-based platform by CAG to host the IBD GRS tool has taken longer than anticipated. Further, negotiations on a funding agreement have delayed this collaboration. Ultimately, the Quality Improvement Initiative for IBD will equip IBD healthcare providers from across Canada with the tools they need to engage in quality improvement in their clinics, and ultimately deliver better care to IBD patients.
No matter where a patient lives, it is essential that they can access their healthcare team. Early disease detection and timely IBD care can improve overall quality of life, and reduce the need for invasive and expensive surgeries. However, there is significant disparity in access to specialized IBD care between urban and rural communities across Canada. IMAGINE Network’s partner, Crohn’s and Colitis Canada has embarked on an innovative project to improve access to quality IBD care for individuals living in rural and remote communities throughout Ontario. As a participant site within the Promoting Access and Care through Centres of Excellence (PACE) network, Mount Sinai Hospital (led by Dr. Geoff Nguyen) is conducting eVisits through the newly launched telemedicine program for adult patients living with Crohn’s disease and Ulcerative Colitis who reside in underserviced locations throughout Ontario. Eligible individuals:
- Have a diagnosis or Crohn’s disease or ulcerative colitis;
- Live at least 100 km outside of Toronto; and
- Require, but are not currently receiving, care from an IBD specialist OR are currently a patient at the IBD Centre of Excellence at Mount Sinai Hospital.
Patients in the IBD telemedicine program have access to real-time medical consultations from Gastroenterologists who specialize in IBD management. Telemedicine essentially involves a health care specialist speaking to a patient through videoconferencing technology similar to Skype or FaceTime, but within a secured computer network. A telemedicine eVisit is similar to a regular office visit. The only difference is the doctor sees and talks to his or her patient through a television or computer screen. These eVisits allow people with Crohn’s or colitis to receive consultations and follow-up appointments without the need to leave their communities. Through the use of this technology, this program endeavors to minimize the disruption, stress and cost that can be associated with travel to Toronto for IBD-related medical appointments.
In the past year, researchers increased the number of IBD patients accessing telemedicine from 50 to 128, and increased the number of IBD Ontario Telemedicine Network (OTN) locations from 33 to 55. The PACE telemedicine program has also enabled new IBD consultations to be scheduled within approximately 17 days of referral, and 83% of patients with active IBD symptoms are seen within 2 weeks.
Since the program’s launch, the telemedicine team has connected patients with specialists in over 70 host sites across Ontario. Whether it is providing a student away from home with access to their medication, or helping a senior with limited mobility in a rural community, the program ensures patients receive care that they might not otherwise be able to access. Through Ontario Telemedicine Network centres, these patients met with specialty care teams including gastroenterologists, colorectal surgeons, nurses, and dietitians. In some cases, patients have been able to receive specialty care within a week, which is considerably less than the two-to-three-month wait period many patients face.
The success of the Telemedicine Program over the past two years has been remarkable, and is growing. The program has recently begun facilitating easy, at-home video conferencing. Led by Dr. Vivian Huang, and designed particularly for high-risk pregnancies, it is a novel and welcome approach to providing specialty services. The adoption of a digital self-monitoring app in IBD care within the Telemedicine Program is also an exciting new development. The app allows patients to regularly track their symptoms and communicate them back to their IBD team. The IBD Telemedicine Program recently expanded to the Thunder Bay area via Dr. Petros Zezos, a gastroenterologist and hepatologist with a long-term interest in IBD. Dr. Zezos and Registered Nurse Shelley Bouchard met with people in the community who are impacted by IBD, with the support of the Thunder Bay Chapter of Crohn’s and Colitis Canada to field questions from the audience about treatment options, research directions, nutrition, and medicinal marijuana and helped researchers learn more about the needs of patients in Thunder Bay.
Given the tremendous success of the Telemedicine Program, Dr. Nguyen and Ms. Bouchard are now working with other PACE Centres of Excellence to make similar programs available to IBD patients across the country. A clinical trial evaluating telemedicine offerings is underway in Ontario with a view to expand the program across the country. The Telemedicine Program is one way that IMAGINE Network and CCC’s PACE projects making strides in improving IBD patient outcomes.
Policy KT Project: Reducing Emergency-department Usage in People with Inflammatory Bowel Disease in Provincial Health Systems in Canada (January 2019)
Canada has one of the highest rates of inflammatory bowel disease (IBD) in the world, affecting approximately one in every 150 Canadians. Given the burden of IBD and complications associated with its care, there is a high utilization of emergency department healthcare services in Canada. Therefore, this topic was prioritized by IMAGINE Network’s KT Working Group to serve as a powerful exemplar for policy-makers on how to systematically deal with issues pertaining to complex single conditions, instead of a one-size-fits-all approach to chronic-disease management. Specifically, in determining how to ensure appropriate, cost-effective services for IBD are available to those who need them, policy-makers will have the tools to think through how they can establish nimble health systems that are positioned respond to condition-specific issues.
The IMAGINE Network engaged McMaster Health Forum to convene two citizen panels on the subject of reducing emergency-department usage in people with inflammatory bowel disease in provincial health systems in Canada, followed by a stakeholder dialogue. The panels and dialogue – both informed by a pre-circulated synthesis of the best-available data and research evidence on the topic. The panels brought together a total of 23 citizens from across Canada, and the dialogue brought together 23 participants – 6 policymakers and managers, 2 healthcare professionals, 6 other types of stakeholders, and 9 researchers – from across Canada to examine the problem, elements of a potentially comprehensive approach for addressing it, and key implementation considerations.
In addressing some of these challenges facing patients with IBD, citizens expressed their collective desire for greater access to reliable and trustworthy sources of information and to patient-held records that include information on IBD to support self-management, front-line service enhancements in primary care and emergency departments for patients with IBD, and the use of remote consultations (by email, telephone or web-based platforms) with an IBD care team as an option for those living in rural and remote communities, but also for those experiencing an IBD flare who may not be physically able to attend an in-person consultation.
Stakeholder dialogues participants also expressed concern about patients’ reliance on emergency departments as their treatment option ‘default,’ a lack of strong connections among care providers and ‘one-size fits all’ guidelines, and a lack of service integration and system-wide leadership. Therefore, recommended better enabling self-management and the establishment of IBD care teams as key solutions for challenges raised, and identified six overarching principles to guide efforts to reduce emergency-department use among IBD patients in provincial health systems in Canada.
The results of this project have been disseminated by IMAGINE Network and its patient advocacy partners including McMaster Health Forum, Crohn’s and Colitis Canada, Canadian Digestive Health Foundation and Gastrointestinal Society, which have a cumulative social media community greater than 70,000 followers. All products from the project can be downloaded from the website and links disseminated through Facebook, Twitter and e-newsletters. The next steps identified are informing ongoing conversations among participants about to how to improve systems across Canada. For example, Manitoba has revised its health care model to Shared Health Manitoba and Dr. Charles Bernstein, spurred by this KT policy initiative and armed with the evidence summaries, has since engaged with health administrators and policy-makers about strengthening regional efforts in Manitoba.
A comparison between the two sets of guidelines revealed some differences. Both sets of guidelines used the GRADE system to evaluate the quality of the scientific evidence available and both had one methodologist in common (PM) and were presented with the same data to interpret. There were similarities in conclusions for many statements but there were some instances the groups reached different treatment recommendations for patients with IBS. In particular, the Canadian IBS guidelines were broader in scope, including recommendations on diagnostic testing and alternative therapies for IBS. Both guidelines evaluated many of the same pharmacological interventions for IBS but again differences were found. For example, the US guidelines gave a strong recommendation for lubiprostone whilst the Canadian guideline gave this drug a conditional recommendation. Furthermore, while the American guidelines suggested the use the non-absorbable antibiotic rifaximin for reduction in global IBS symptoms as well as bloating in non-constipated IBS patients, the Canadian consensus group chose not make a recommendation (neither for nor against) offering diarrhea-predominant IBS patients one course of rifaximin therapy to improve IBS symptoms. Input from primary doctors and the patient representative was a major factor in these differing interpretations of the data. Therefore, the composition of a more diverse group of healthcare professionals and the inclusion of the patient’s perspective within the Canadian consensus group is likely to have influenced the final product.
Clinical practice guidelines are important to healthcare professionals and patients, and are critical to advancing patient outcomes. Once the Canadian guidelines are published in a scientific journal they will be communicated to clinicians treating IBS patients. IMAGINE will work closely with CAG and patient advocacy groups to build an awareness campaign to disseminate this information to a broader group of key stakeholders (including patients and policy makers). The importance of the patient/physician relationship is paramount when making decisions regarding treatment plans, which, in turn, impacts the likelihood of adherence to the treatment plan. It is therefore expected that with greater uptake of these guidelines, patient outcomes will improve ultimately resulting in cost savings to the healthcare system.