Canadians with inflammatory bowel disease are being asked to help identify what’s missing in their care
Two Canadian health-care and health policy groups, both registered charities, are looking for patients to take part in surveys intended to help improve their treatment. Conducted by the Gastrointestinal (GI) Society and the Canadian Society of Intestinal Research (CSIR), the surveys focus on the experience of people being treated for gastrointestinal and other inflammation-causing diseases.
The first survey, IBD Patients: What’s Missing in Your Care?, is open to those who have been diagnosed with a form of inflammatory bowel disease (IBD); IBDs cause severe diarrhea, abdominal pain, fatigue, and weight loss, and include Crohn’s disease, ulcerative colitis, ulcerative proctitis, and microscopic colitis. Available in English and French and open to patients around the world, the survey focuses on patients’ experience of their care and treatment.
The second survey focuses on the experiences of patients taking biologic or biosimilar medications to treat one of an array of diseases that cause inflammation, including IBDs, diabetes, rheumatoid arthritis, cancer, osteoporosis, psoriasis, HIV, multiple sclerosis, and growth deficiencies. (Biologics are medications produced from or containing organic material, and biosimilars are essentially generic versions of biologics.) The Canadian Biosimilar Medication Experience is a follow-up to a 2015 survey.
“Health-care is an ever-changing space of innovation and variation,” the GI Society’s president and CEO, Gail Attara, said in a statement. “The GI Society and the CSIR seek to balance health policy with real world evidence and ensure that the patient voice is the prime focus. That’s why we urge all individuals living with IBD to participate in our global survey and Canadian patients with inflammatory conditions of any kind to complete the biosimilar survey.”
The CSIR hopes the survey will provide a better understanding of what needs aren’t being met among patients with IBDs. Since 1976, the charity has been raising funds to research IBDs and better inform the public about the diseases. The charity estimates that about six million Canadians live with irritable bowel syndrome, while 233,000 more suffer from chronic inflammatory bowel diseases.
Both surveys can be found at badgut.org under the “Latest News” heading.