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.
RECRUITMENT AND RETENTION PROJECT IMPLEMENTATION (Implementation completed June 2021, Evaluation on-going)
As reported in our last year’s annual report, our Network supported an innovative patient-led patient-oriented qualitative research project to understand the motivations and barriers to getting and staying involved in IMAGINE’s main research study, MAGIC study. Given the study’s ambitious recruitment target and long-term commitment, a group of IMAGINE Patient Research Partners (PRPs) co-led, co-designed and executed a qualitative study to better understand the motivations and barriers of healthy controls to participating in MAGIC to inform more effective recruitment and retention strategies. The findings were shared with MAGIC’s Site Directors and Research Coordinators during their monthly meetings to identify pragmatic solutions that could be implemented locally immediately. Furthermore, strategies that were deemed low-cost and high-impact were considered for a national roll-out. As such, this past year, IMAGINE embarked on creating new content to promote enrolment and retention for MAGIC.
(1) Recruitment Videos
A series of three short recruitment videos were created to promote and spark recruitment for the MAGIC Study (Sketch Video, Bacteria Video and Got Poop). These videos are animated and are only 30-seconds in length which make them ideal for distribution over social media platforms. Two out of three of the videos are targeted to healthy individuals which remains our greatest recruitment challenge. We submitted and received approval from our McMaster’s REB and have now disseminated these videos over social media and posted them on our website. We have also shared them with our partners (including CCC, CDHF and GI Society) and encouraged them to distribute with their audiences. Furthermore, we have produced French versions of the videos for use with our Montreal recruitment sites and these are currently under review by the local REB before dissemination.
(2) Video Interviews
The “Get To Know Us Interview Series” is intended to increase engagement with our current study participants so that they remain excited and motivated to stay enrolled. We created of six different interviews with key stakeholders, including three patients (Kim Daley, Kate Mason, and Megan Marsiglio) and three investigators (Drs. Paul Moayyedi, Charles Bernstein, and Michael Surette). These have been posted on our website but to increase their accessibility and longevity over social media, we have also broken down each video into short segments and added closed captioning.
These marketing assets were developed and implemented with the support of our patient partners. They will also contribute to the evaluation phase to determine the overall success of this initiative. To date, there have been more than 500 views for these videos over our website and Facebook posts. We are currently monitoring the impact of these videos on overall recruitment and retention rates and are hopeful that the online nature of these collateral materials will prove to more beneficial than traditional posters due to COVID restrictions.
Raising Profile of Patient Voice in Healthcare Decision-Making (On-going)
Our Network’s Principal Investigator, Dr. Paul Moayyedi, was appointed Co-ordinating Editor of Cochrane Gut back in June 2020. Cochrane Gut aims to use evidence from randomised controlled trials to answer practical questions on the diagnosis, prevention, treatment, and rehabilitation of diseases the gastrointestinal system. This includes disorders of the oesophagus, stomach, duodenum, pancreas, and bowel. Cochrane Gut was formed by the merger of Cochrane Upper Gastrointestinal and Pancreatic Diseases and Cochrane IBD. The Gut group has a large portfolio of reviews related to inflammatory bowel disease, both ulcerative colitis and Crohn’s disease. The group also considers reviews pertaining to functional bowel diseases of the gut, as well as reviews that cover both adults and children. Dr. Moayyedi has advocated for strong engagement of patients as lay reviewers in this group. As such, a strong partnership has formed between the Cochrane Gut Group and the IMAGINE Network. Six of IMAGINE’s patient partners (Alysia De Nino, Katherine Mason, Emma Neary, Jeanette Van Roosmalen, Sandra Zelinsky, Kimberlee Daley, and Doug MacKay) have already completed reviews on the following GI related articles.
- Treatments for intractable constipation in childhood (protocol) (Cochrane Gut)
- Probiotics for treatment of chronic constipation in children (protocol) (Cochrane Gut)
- Treatment for gastrointestinal and pancreatic neuroendocrine tumours: a network meta-analysis (protocol) (Cochrane Gynaecological, Neuro-oncology and Orphan Cancer Group)
- Open versus laparoscopic pyloromyotomy for pyloric stenosis (review) (Cochrane Gut
- Psychosocial interventions for functional abdominal pain syndromes (FAPS) in children (protocol) (Cochrane Gut) *pre-publication
- Antibiotics for the induction and maintenance of remission in ulcerative colitis (review) (Cochrane Gut) *pre-publication
- Plastic stents versus metal stents for endoscopic ultrasound guided transmural drainage of pancreatic fluid collections (protocol) (Cochrane Gut) *pre-publication
- Interventions or treating iron deficiency anaemia in inflammatory bowel disease (review) (Cochrane Gut)
- Probiotics for induction of remission in Crohn’s disease (review) (Cochrane Gut)
- Patient education interventions for the management of inflammatory bowel disease (protocol) (Cochrane Gut)
- Interventions for the management of abdominal pain in ulcerative colitis (review) (Cochrane Gut)
- Interventions for the management of abdominal pain in Crohn’s disease and inflammatory bowel disease (review) (Cochrane Gut) *pre-publication
The IMAGINE Network has also provided input into Plain Language Summary Template used by Cocharane Gut. This collaboration has ensured there is a stronger patient voice in review articles which have significant potential to influence healthcare practices.
Dr. Moayyedi’s commitment to patient engagement also served to boost his application as Co-Editor-in-Chief of Gastroenterology, the prestigious journal of the American Gastroenterological Association. IMAGINE’s patient partners have agreed to evaluate selected articles being published in Gastroenterology and potentially, in some cases, to contribute commentary in order to promote the patient perspective. Another potential benefit of involving patients is they can be social media promoters of content. The IMAGINE patient partners have approximately 10,000 followers and therefore can act as ambassadors for the research published by Gastroenterology to increase its social media presence among all the GI journals.
These initiatives have significantly raised the importance of patients’ lived experiences and have resulted in a growing movement to engage patients in health care decision-making, quality improvement initiatives, and medical research.
Patient Monitoring App for IBD (completed Jan 2021)
Through IMAGINE’s partnership with Crohn’s and Colitis Canada, the PACE Health Services research projects (Telemedicine for IBD; HealthPROMISE Patient Monitoring App, Quality Indicators in IBD Care; and e-Clinical Care Pathways to reduce steroid use) continue to enhance healthcare delivery for IBD across key IBD Centres of Excellence in Canada. Of particular note this past year, the Patient Monitoring App Project was completed at McMaster University and results from the study were published online in the Journal of Medical Systems.
With the rapid rise of smart phones, electronic health (eHealth) monitoring platforms may be an important healthcare tool to provide patients with effective self-management strategies to complement outpatient care. HealthPromise involves the use of technologies that facilitate health-related communication between patients and health care providers. It also provides patients with a means of tracking their medical information, learning about their condition, and getting their questions answered.
HealthPROMISE was developed based on patient input and designed to promote patient participation. Its creation was guided by a study that found three parameters that characterized the needs of IBD patients. The investigators noted that patients complained of a lack of information dissemination by their providers, struggles with the social impacts of IBD, and called for a tool that facilitates symptom monitoring with physician feedback to patient input. Through the application, patients track their symptoms, medications, quality of life scores (measured by Short Inflammatory Bowel Disease Questionnaire (SIBDQ), quality of care scores (measured by IBD quality indicators developed by the Canadian Association of Gastroenterology), visits with physicians, emergency room (ER) visits, or hospitalizations. They can then access their personal data through an individual patient dashboard where they can view the details of their different ePRO domains and their longitudinal trends. Their physicians are also able to keep track of the data, suggest changes in lifestyle or treatment, or facilitate a clinic visit. Further, the application also permits the flagging of patients with suboptimal disease control, medication non-adherence, or extra-intestinal complications which may require further attention.
The purpose of this study was to investigate whether the use of an IBD digital health monitoring platform, HealthPROMISE, leads to better quality of care and improved health outcomes in IBD patients. IBD patients were recruited in gastroenterology clinics and asked to install the HealthPROMISE application onto their smartphones. Patient satisfaction, quality of care, quality of life, patient symptoms, and resource utilization metrics were collected throughout the study and sent directly to their healthcare teams. Patients with abnormal symptom/SIBDQ scores were flagged for their physicians to follow up. After one-year, patient outcome metrics were compared to baseline values. Overall, out of 59 patients enrolled in the study, 54% logged into the application at least once during the study period. The number of IBD-related ER visits/hospitalizations in the year of use compared to the prior year demonstrated a significant decrease from 25% of patients to 3%. Patients also reported an increase in their understanding of the nature/causes of their condition after using the application. This study demonstrated that digital health monitoring platforms may aid in reducing the number of ER visits and hospitalizations in IBD patients.
Supporting Rapid Learning and Improvement for Select Chronic Conditions in Canada
(final results completed February 2020)
Adopting a problem-focused rapid-learning and improvement orientation in health systems presents an opportunity for constant and iterative improvements in patient care and experiences across a number of chronic conditions. Rapid learning can take place at all levels of a health system (self-management, clinical encounter, program, organization, local and provincial health authority, and government), however, there are at least two different ‘ways in’ to establishing and strengthening the characteristics required to support rapid learning and improvement. The first is through a focus on a local area (e.g., an entire provincial health system) while the second is through a prioritized problem (e.g., a specific set of conditions).
The IMAGINE Network’s KT Working Group, led by Dr. John Lavis (McMaster Health Forum) in collaboration with the Chronic Pain Network (CPN), and CHILD-BRIGHT, organized, financially supported, and convened a citizen panel (January 2020) on the subject of supporting rapid learning and improvement for select chronic conditions in Canada, followed by a stakeholder dialogue on the same subject (February 2020) that was informed by the insights captured at the panels. The panels brought together a total of 12 citizens from across Canada (from five provinces, namely British Columbia, Alberta, Ontario, Quebec and Nova Scotia), and the dialogue brought together 17 participants – policymakers and managers, healthcare professionals, stakeholders, and researchers – from across Canada to examine the problem, elements of a potentially comprehensive approach for addressing it, and key implementation considerations. The thematic insights and values underpinning citizens’ views about and experiences with key issues related to problem-focused rapid learning and improvement were captured in a panel summary, and the insights from the dialogue were captured in a dialogue summary.
Key insights emerging from the citizen panel and stakeholder dialogue include:
- Panelists identified a range of important challenges that were linked to their own care experiences (e.g., access to their providers and health data, inadequate or incomplete care, access to information on their condition).
- Panelists identified the need for better supports for engaging patients in identifying strengths and weaknesses in health systems. This could include creating tailored patient information about assets and gaps in health systems and creating space for them to share feedback with stakeholders.
- Panelists discussed that in order to observe improvements and progress from health-system changes, there is a need to establish mechanisms that ensure realistic and meaningful targets are set that relate directly to improving patient care and experience.
- Panelists identified limited resources (both human and financial) as one of the biggest barriers to supporting rapid learning and improvement for select conditions. They also expressed their doubts on health system actors’ willingness to move away from the status quo to embrace a mindset conducive to continuous learning and improvement. In discussing potential strategies to move forward, panelists identified ways for the health system to engage patients, such as involving them in roundtable discussions with stakeholders, drawing on their lived experiences to design relevant decision supports, and co-creating timely and relevant evidence through patient-oriented research opportunities.
- Participants generally agreed that the four aspects of the problem outlined in the evidence brief captured important aspects of the challenges inherent in establishing rapid-learning health systems (i.e., opportunities exist but aren’t always acted on, some problems (or conditions) may not be prioritized or resourced centrally, other system initiatives can detract focus from a particular problem, and not all assets are in place or well connected).
- Participants suggested three next steps: 1) develop a succinct and compelling ‘elevator pitch’ to engage key stakeholders; 2) build networks and an approach for developing the next generation of champions; and 3) use existing success stories as a platform upon which to move ahead with additional efforts across Canada.
The results of the project have been made available for free download on the Forum’s website with links from the IMAGINE website and disseminated via IMAGINE & the Forum’s e-newsletters and social media channels (reaching an audience size of 10,000 users). An email service was also created in Health Systems Evidence for broader engagement of policymakers, stakeholders and researchers with an interest in staying apprised of the latest synthesized evidence published on the topics addressed in the project.
Fecal Microbial Transplantation in active Ulcerative Colitis with Antibiotic Pre-treatment – Analysis Phase – October 2020
Ulcerative colitis affects approximately 80,000 Canadians and is thought to arise from a disordered immune response to gut contents in predisposed individuals. Current therapies for UC remain expensive and imperfect with 50% of patients needing hospitalization and 20% requiring colectomy at some time during the course of their illness. Fecal Microbial Transplantation (FMT) is the administration of stool from a healthy screened to a patient and has shown effective in the treatment of C. diff. IMAGINE investigators were the first in the world to conduct an RCT of FMT to induce remission in active ulcerative colitis (UC). The seminal study showed positive results and spurred growing interest from researchers, funders and patients. As such, the IMAGINE Network initiated the CRAFT study (Ulcerative Colitis Remission through Antibiotics & Fecal Transplantation) to investigate whether the effectiveness of FMT to induce remission in UC patients can be enhanced with an antibiotic pre-treatment.
A total of 76 subjects were recruited and randomized to receive treatment or placebo. The study had an initial target of 80 subjects however, due to challenges related to COVID it became difficult to collect and administer FMT preparations and so it was decided to close out the study. Analysis is currently underway and final results will be shared via publication in scientific meeting and journal. However, interest in this study from the patient and research community has already been tremendous. Patients with UC from across North America were keen to participate and many even travelled as far as 4 hours to join the study. Dr. Tariq Iqbal (University Hospitals Birmingham, UK) is collaborating with Dr. Moayyedi to launch a complementary study in Europe evaluating the best route to administer FMT in UC patients. Dr. Paul Moayyedi and Dr. Michael Surette participated in scientific podcasts by FutureTech to discuss the potential of FMT and microbiome. Furthermore, a lay podcast by Guts & Glory featuring Dr. Paul Moayyedi and Ziyaad Mia (a study participant) was also held reaching over hundreds of stakeholders.
Also noteworthy is that this research study is being complemented by several other studies. The Network is also supporting additional trials that are investigating the efficacy of FMT to treat Crohn’s disease, Pouchitis and Major Depression in patients with IBS. Also, a qualitative research study, led by IBD Nurse Practitioner and co-funded by Crohn’s and Colitis Canada, is looking into patient perceptions of FMT, specifically comparing experiences before and after treatment, and showing how expectations before the treatment administration measure up to real-life experiences. The results from this study will be indispensable in addressing major concerns that may be preventing more patients from seeking out FMT treatment, as well as providing recommendations for improving patient experiences throughout such treatments. Finally, another IMAGINE-supported study, led by Dr. Deborah Marshall, is conducting a Discrete-Choice Experiment (DCE) to quantify patient preference of FMT compared to other conventional treatment options. These complementary studies will better inform health policy-makers in making decisions regarding FMT coverage.
An innovative patient-led patient-oriented qualitative research project to understand the motivations and barriers to getting and staying involved in IMAGINE’s MAGIC study – Implementation Phase – (completed September 2020)
The IMAGINE Network’s main research study, MAGIC, is a large longitudinal national cohort study investigating the interactions between inflammation, microbiome, diet and mental health in patients with inflammatory bowel disease(IBD) and irritable bowel syndrome (IBS). This study aims to recruit 8000 subjects (2000 CD, 2000 UC, 2000 IBS, and 2000 healthy controls). Each subject is assessed annually for 4 years and is asked to submit blood, urine and stool samples, and complete online questionnaires on their health status. To date, over 4400 subjects have been recruited but, approximately 10% of the subjects have withdrawn from the study – the primary reason cited has been “No longer interested”. Given the study’s ambitious recruitment target and long-term commitment, a group of IMAGINE Patient Research Partners (PRPs) led a qualitative study to better understand the motivations and barriers of healthy controls to participating in MAGIC to inform more effective recruitment and retention strategies.
This study was co-led, co-designed and executed by IMAGINE’s PRPs with support from academic researchers. PRPs were trained in qualitative research, co-designed the interview guide, and developed a semi-structured interview guide. Qualitative semi-structured interviews were conducted by seven PRPs and were recorded electronically. All of the interviews were transcribed by a PRP, a trained medical transcriptionist. Five PRPs conducted the data analysis by coding the interview content into common themes.
A total of 27 interviews (13 male and 14 female) were conducted. Participants ranged from 20-75 years old and did not have either IBD or IBS. The top four themes of key motivators to study participation that emerged were Convenience, Experience, Communication, and Compensation. Participants identified Convenience as being low time commitment, flexibility of scheduling, multiple recruitment locations or using a courier for collecting samples. The Experience category reflects the desire to stay involved if their experience is relaxed, hassle-free, and fun, with emphasis on the study being well-organized. Participants stressed the importance of Communication such as reminders, annual updates, and newsletters. Compensation was important to some participants such as gift cards, parking reimbursement, or non-monetary items such as thank you cards and tokens of appreciation. The following mind map summarizes these findings:
The findings were shared with MAGIC’s Site Directors and Research Coordinators during their monthly meetings to identify pragmatic solutions that could be implemented locally immediately. Furthermore, strategies that could are deemed low-cost and high-impact will also be considered for national roll-out. This project was recently accepted as an abstract to the Alberta SPOR Support Unit’s Virtual Institute as we hope that its findings will help inform recruitment and retention strategies for other long-term and high-commitment cohort clinical studies.