In 2016, Crohn’s and Colitis Canada launched the Promoting Access and Care through Centres of Excellence (PACE) program to bring Crohn’s and colitis specialists from across Canada together to pool knowledge and improve the level of care available to those living with inflammatory bowel disease, so they can ultimately experience a higher quality of life.
The $2.5 million initiative created the first national network of IBD Centres of Excellence, with those centres being located at the University of Calgary, the University of Alberta, McMaster University, McGill University, and Mount Sinai Hospital.
After one year of work on four major research areas, here’s what has been achieved, and what’s on the way.
Telemedicine outreach
Researchers at Toronto’s Mount Sinai Hospital set out to enable people with IBD living in remote areas to receive consultative services from healthcare specialists via e-Visits. These visits allows patients to receive care in their community, saving them hours of travel time, and the costs associated with accommodations, missing school or work, etc.
Since launching the pilot project in June 2016, the PACE IBD Telemedicine Program has facilitated 43 clinical consults for 30 patients from across Ontario. Each telemedicine e-visit saved patients, on average, an estimated 19 hours of travel time.
Patients tell researchers that the program has benefitted them by reducing wait times to see a medical specialist, eliminating excessive travel, avoiding the need to take significant time off work or school, and by helping them receive earlier diagnosis and treatment.
Year two of the PACE IBD Telemedicine Program will see its capacity double to serve more patients.
Alleviating reliance on steroids
The repeated use of steroids to treat Crohn’s or colitis can lead to serious complications. With that in mind, researchers from the Universities of Calgary and Alberta are aiming to minimize the repeated use of steroids, and develop care standards applicable to all Canadians with IBD.
In their first year with PACE, these researchers developed a series of electronic Clinical Care Pathways (e-CCPs), which translate practice guidelines into user-friendly tools for clinicians.
The e-CCPs were designed to help minimize exposure to systemic corticosteroids and reduce delays in starting patients on biologic treatments. Electronic access to the CCPs will allow IBD care providers to deliver the same standard of care to their patients, based on the most up-to-date clinical practice guidelines.
Researchers will now conduct a study comparing the outcomes of IBD patients treated by specialists using the e-CCPs to the outcomes of patients treated with conventional approaches.
Using patient feedback to guide disease management
Many IBD patients are looking to be more involved in their care. At the same time, IBD specialists see the value in having more regular contact with patients to better monitor symptoms. To address both of these areas, researchers from McMaster University began developing a mobile app called HealthPROMISE. The HealthPROMISE app allows patients to regularly note their symptoms and create reports. Physicians and nurses will be able to receive patient-entered information electronically so they can track symptoms and medication adherence, and determine who may need additional care or referral to a specialist services.
In the year ahead, the HealthPROMISE app will be launched with pilot projects at both McMaster University and Mount Sinai Hospital.
Quality indicators for IBD care
To improve the quality of care delivery for all Canadian IBD patients, researchers from McGill University have developed a list of 44 quality indicators (QIs) that will act as benchmarks for an IBD clinic to measure how well it is delivering patient-centred care. Patients were consulted in the development of the QIs to ensure their specific concerns were addressed.
Researchers on this project are also working with the Canadian Association of Gastroenterology (CAG) to develop the Inflammatory Bowel Disease Global Rating Scale (IBD GRS). The scale will aid IBD clinics in assessing the quality of service they provide by assigning letter grades from A – D to the quality of both clinical care and patient experience. Similar to the IBD QI Project, this initiative encourages IBD clinics to evaluate and assess their practice on a regular basis and take steps to improve where necessary.
The next phase of this project is to pilot the IBD QIs and IBD GRS to give researchers a better idea of what a wider roll-out to hospitals and community clinics would look like.