Patient Voice plans to change health care through experiences

Source: Spectator, Published November 18, 2018

Sonia Seguin fought a secret battle for years before she had the courage to tell someone.

The stigma of an eating disorder at age 18 was one of the reasons she kept her problem in the dark – even hiding it from her parents, both of whom were doctors.

“It nearly killed me. Many times. You get pretty good at hiding it,” Seguin said. “I knew something was wrong, but I couldn’t bear to admit I had an eating disorder. It seemed so shameful. It was devastating for me and for my parents.”

The Spectator has written about 32-year-old Seguin before – how she overcame those barriers, faced the stigma and got help. She’s now the executive director of Body Brave, a not-for-profit support group based in Hamilton for those struggling with eating disorders and body-image issues.

Seguin has been selected as one of 14 people across the country to participate in Patient Voice, an innovative new program set up by the Canadian Medical Association. Its purpose is to use the experiences of patients and caregivers to help develop new policy and guidelines within the health-care system.

“I was really honoured and quite humbled and excited,” said Seguin, who was one of 500 applicants across Canada. She’s optimistic the program can help change the course of health care.

“I am so excited to learn. I want to go with an open mind and I’m really honoured to be meeting these people.”

Dr. Gigi Osler, president of the CMA, said the committee comprises both patients and caregivers, each with different medical issues, experiences and perspectives that the organization is hoping to learn from.

“The patient is at the centre of everything we do as doctors,” Osler said. “We can have a more meaningful impact on health care when we are working together and when we incorporate the experiences of caregiver and patient.”

The committee’s focus is not exclusively on eating disorders, but on a full range of health issues – from cancer and cannabis to senior care.

“It is a new journey and we are going to walk it together,” Osler said. “We wanted to make sure we had representation from coast to coast, diversity in age and location, from rural to major cities, patients and caregivers.”

Osler, too, recently had to navigate the system – not as a doctor, but as a woman helping her ailing father.

“Stepping into the daughter and caregiver role, you experience the health-care system in another manner than I would normally experience it as a doctor,” she said.

“Bringing those perspectives together through Patient Voice, we can identify the gaps in the system to make things better,” Osler said. “They (the group) might bring issues up we aren’t even aware of.”

The group of 14 volunteers will meet in Ottawa for the first time on Dec. 6. Because members are spread across Canada, Osler said future meetings may take place online, but the initial gathering will be face to face.

“I can’t tell you how excited we are to start and to bring together these different individuals,” she said. “It can only enrich the work we do and enhance health care together in the coming years.”

For Seguin, it’s an opportunity to further the work she is doing at Body Brave, helping others with eating disorders navigate the system, find treatment and get help.

“I hope the lived experience of patients is highlighted,” Seguin said. For her, it was a devastating combination of lack of services and not knowing how to find them”

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