How patients can use their experience to influence real change in health care

By Christy Janssens

When two of Liana Sikharulidze’s grandparents were diagnosed with dementia, she became their caretaker.

Sikharulidze navigated rehabilitation centres and hospitals as she tried to give them the best care and, eventually, help them pass away comfortably surrounded by love at home. She faced many challenges, including a stressful two-and-a-half months trying to find the right medication for her distressed grandfather.

These experiences inspired her to advocate for improvements in senior and dementia care.

As a Patient and Family Partner, she gives a voice to the patient and caregiver experience for health care projects in development. At Unity Health, for example, she was a co-investigator and partner on two grant proposals. One focused on creating a pan-Canadian network to support dementia research. The other’s goal was to implement infection prevention and control strategies in long-term care homes.

“Liana was an invaluable resource for our team,” said Dr. Christine Fahim, a scientist in the Knowledge Translation program in the Li Ka Shing Institute at St. Michael’s and co-principal investigator on these proposals. “She helped plan the study’s objectives, methods and outcomes. She also co-presented the proposal to the funder.”

Patient and Family Partners share insights based on personal experience that can lead to policy or system changes.

“Patient and Family Partners are critical to conducting research because they help us identify outcomes that are meaningful to them and their families,” said Dr. Fahim. “Often, these outcomes have not been considered by the research team.”

Lived experience is a key part of developing research questions and addressing gaps in health care.

“We can make sure the right questions and issues are being addressed because we have lived it,” said Sikharulidze.

At Unity Health, opportunities to become a patient advisor are posted periodically. Patients can apply to become an advisor, as a volunteer, when recruitments open via website or social media channels. Their role is to offer perspective in areas such as safety procedures, education plans, research projects and new policies within the hospital.

In her experience with St. Michael’s proposals, Sikharulidze felt that her feedback was valued.

“St. Michael’s has treated me so well. They made me feel part of their team,” said Sikharulidze. “I’m amazed at how humble the team is. My role is to speak up and advocate, but it is important to have a team who will humbly listen. The St. Michael’s team cares about what they do. Their team is intelligent, collaborative and provided conditions for open conversations. It is a great example of positive, engaging leadership that supports the team’s work and outcomes.”

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 more than 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.

About Unity Health Toronto

Unity Health Toronto, comprised of Providence Healthcare, St. Joseph’s Health Centre and St. Michael’s Hospital, works to advance the health of everyone in our urban communities and beyond. Our health network serves patients, residents and clients across the full spectrum of care, spanning primary care, secondary community care, tertiary and quaternary care services to post-acute through rehabilitation, palliative care and long-term care, while investing in world-class research and education. For more information, visit www.unityhealth.to.