People living with Crohn’sDisease or ulcerative colitis are encouraged to attend a focus group discussion in Williams Lake about treatment decisions.
Sandra Zelinsky, a patient engagement researcher, said the session will be held Friday, Sept. 13 from 4 to 8 p.m.
“I am working with a group of researchers at the University of Calgary and we’ve received an education funding through Takeda Canada to develop a patient-led peer-to-peer research project where we are looking to understand what matters most to people living with inflammatory bowel diseases making decisions around treatment,” Zelinksy said.
“That can be wants, needs, questions — anything people might have when going to the doctor.”
Similar focus groups will be held in Calgary on Monday, Sept. 16 and in Toronto on Friday, Sept. 20.
After the focus groups, Zelinsky will use the information gathered from them to develop a patient-informed survey.
“Then we will do a mirror-image survey that will go out to the IBD gastroenterologist and nurse practitioners who work with IBD patients.”
From the surveys that go to the patients and to the medical practitioners, the results will be compared to see what patients want to know and what clinicians think their patients want to know.
“The bigger picture is to share decision making between the doctor and the patient,” Zelinsky said, adding she will continue to communicate with participants of the focus groups to make sure the survey reflects their perspective and that the patient voice informed the survey.
“We hope to launch the survey internationally and there will be clinicians from across Canada that will send it out to their patient population and then the GI that is supporting the project from the University of Calgary will reach out to his network as well.”
Depending on the results and funding, and if there is a difference between the patient and clinician perspective, there might part of a follow up focus groups.
Anyone wanting to participate in the Williams Lake focus group is asked to contact Zelinsky by phoning or texting 1-250-706-8654.
Residents from nearby communities and cities are also invited to attend.
Zelinsky was in Williams Lake in December 2018, with another research group, and hosted a focus group discussion that attracted more than a dozen local residents.
Read more: Do you suffer from Crohn’s or colitis? Researchers seek input
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