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Effective patient engagement in health care requires caregivers and patient groups to collaborate toward a meaningful goal

Toronto, July 8, 2016

By Kaitlyn Patterson

Dr. Yvonne Bombard
Dr. Yvonne Bombard

Patient engagement in health care is most successful when everyone is working toward a meaningful goal, members of a guest panel said at clinical and population research rounds on June 23.

“We need to show openness and transparency by saying we’re not going to get it right every time, but let’s work together to make it better,” said Laura Williams, interim director of Patient, Caregiver and Community Engagement at Health Quality Ontario. “One First Nations patient adviser told me not to be a seagull, meaning don’t fly in, take your morsels, then leave. It’s important to slow it down and learn about the community’s needs.”

The three panel members were Cathy Fooks, president and CEO of The Change Foundation, an independent health policy think tank that works to inform positive change in Ontario’s health-care system; Carole McMahon, a patient member of the pan-Canadian Oncology Drug Review Expert Review Committee; and Williams.

“Meaning comes from both sides and is the basis of engagement,” said Williams. “By removing assumptions and gathering lived experiences, we can come together and create purpose.”

The panel emphasized that caregivers and patients both need to identify what they want to achieve before starting an engagement project.

“If you don’t know why you’re doing the engagement exercise, don’t do it,” said Fooks. “Figure out what you actually need and what your organization’s goals are.”

McMahon said the three essential principles behind collaborative patient engagement were clarity of purpose, process and enabling opportunities. She said groups should start by identifying why patient engagement is important, allow the patient groups to review and provide recommendations to the caregivers, and provide opportunities for patient groups to understand what is happening.

“The professional members of the pan-Canadian Oncology Drug Review Expert Review Committee realized that the economic process of drug funding would be challenging for patient members to understand, so they provided guest speakers and an economist tutor to answer our questions,” said McMahon. “Teaching jargon, explaining acronyms and providing tutorials allow patient members to get engaged and make informed decisions.”

“We need to remember that we’re talking about people, not just numbers and data,” said Williams. “Engaging patients and hearing their stories helps us remember this.”

St. Michael’s has four Community Advisory Panels that include staff, patients and community members who care about health. The focus of the panels is to address patient needs in vulnerable populations, specifically women and children; people who are homeless or under-housed; people with severe and persistent mental illness; and Aboriginals.

The hospital has also created the St. Michael’s Health Services Panel, a group of 28 residents of mid-east Toronto who are helping the hospital identify gaps in health services and recommend ways to address them.

And, St. Michael’s is recruiting patients and family members to sit on Patient and Family Advisory Councils across the hospital to share ideas that will allow care providers to deliver the best possible patient experience.

The panel was moderated by Dr. Yvonne Bombard, a genomics and health services researcher and scientist in the Li Ka Shing Knowledge Institute of St. Michael’s Hospital. Dr. Bombard conducts public and patient engagement research to advance health technology assessment and health service delivery. In 2014, she interviewed 14 oncologists and 28 breast cancer patients in Ontario for a study concerning barriers to obtaining gene expression profiling tests that showed perspectives of both doctors and patients.

About St. Michael's Hospital

St. Michael’s Hospital provides compassionate care to all who enter its doors. The hospital also provides outstanding medical education to future health care professionals in 27 academic disciplines. Critical care and trauma, heart disease, neurosurgery, diabetes, cancer care, care of the homeless and global health are among the hospital’s recognized areas of expertise. Through the Keenan Research Centre and the Li Ka Shing International Healthcare Education Centre, which make up the Li Ka Shing Knowledge Institute, research and education at St. Michael's Hospital are recognized and make an impact around the world. Founded in 1892, the hospital is fully affiliated with the University of Toronto.