A new study conducted by Manitoba scientists aims to identify the top research priorities of families living with Hirschsprung’s Disease (HD). Researchers relied entirely on social media – in particular a Facebook group created by a Winnipeg mom – to recruit families for the study. This approach to recruitment allowed researchers to complete the study much more quickly and efficiently than if they had relied on traditional recruitment methods, and its success could change the course of future studies of its kind.
HD is a condition that affects the large intestine (colon) and causes problems with passing stool. The condition is present at birth as a result of missing nerve cells in the muscles of a baby’s colon, and is relatively rare. Researchers noticed there seemed to be discrepancies between the information needs of families living with HD and those of doctors. With an increasing focus on patient-centered research, which involves patients or members of the public as decision-making members of the research team, researchers wanted to better align HD priorities to serve both audiences. In order to do this, they needed to find and survey a large number of willing HD families – a process that can be costly and time consuming.
“By using social media, we were able to recruit participants from all over the world much faster – we completed a survey of 100 families in just one month,” said Dr. Richard Keijzer, a scientist at the Children’s Hospital Research Institute of Manitoba, professor in the Rady Faculty of Health Sciences at the University of Manitoba, and surgeon at the Health Sciences Centre Winnipeg. “Social media is still a fairly new phenomenon and we are beginning to recognize how it can be used in research. We will use what we learned from this study to guide future research for patients with rare diseases.”
Study results found that the differing HD research priorities of families and doctors included nutrition/growth and gastrointestinal pain – two top priorities for families but not doctors, and diagnostics and surgical complications – two top priorities for doctors but not families. Researchers will use this information to inform their work on HD going forward.
Over the years, families have been using social media to connect and share information about living with HD outside of the doctor’s office. “For a family affected by HD, the first few years can be a roller coaster of total normalcy and repeated hospitalizations. To learn more about this illness, I created an online community for families and patients living with HD,” said Elizabeth Crawford, Winnipeg mom of a child with HD and creator of the “Shit Happens” Facebook group used for recruitment of the study.
“I’m very pleased to know this group has not only helped many families around the world by connecting us all in one place and offering support and advice, but it has now helped change the way researchers and doctors will approach research on the disease.”