Nothing About Us Without Us: How to Become a Provincial Patient and Family Advisor in Ontario
Across Ontario, hospitals, health organizations, and provincial agencies work with Patient and Family Advisors (PFAs)—people who use their lived experiences to help improve healthcare services, policies, education, and patient experiences.
In many ways, it is healthcare shaped by the people it is meant to serve.
For communities that have historically felt unheard, overlooked, or underrepresented in healthcare spaces, our perspective matters.
The phrase “Nothing about us without us” has become an important reminder that decisions impacting communities should include the voices of the people living those experiences firsthand.
What Is a Patient and Family Advisor?
A Patient and Family Advisor is someone who:
has experience navigating the healthcare system as a patient, client or caregiver
shares feedback to improve healthcare experiences
participates on committees, councils, or projects
helps review educational materials and policies
brings a community perspective into healthcare conversations
You do not need a medical background to become an advisor. Your lived experience is the expertise.
Why This Matters
Healthcare systems have historially made decisions about communities without fully understanding how policies, communication, or environments are experienced by the people receiving care. This omission has a direct impact on the healthcare impact of many marginalized groups.
An example of this is vitamin D testing no longer being routinely covered in some provinces, despite racialized populations in Canada being at greater risk for deficiency and often requiring testing to monitor their levels.
Patient and Family Advisors help bridge the gap.
They can influence:
patient education materials
accessibility and communication
cultural safety initiatives
healthcare policies
program planning
hospital experiences and navigation
For racialized communities in particular, representation in these spaces matters. When diverse voices are absent from decision-making tables, gaps in trust, communication, and access can continue to go unnoticed.
Opportunities in Ontario
Organizations across Ontario recruit Patient and Family Advisors, including: hospitals, community health centres, provincial health organizations, mental health agencies, research projects. Check out the links below to see how you can get involved and help define health policy for yourself and people with similar lived experience.
Advisors may:
attend meetings virtually or in person
participate in focus groups
review documents
support research and policy discussions
share experiences to improve care delivery
Some opportunities are volunteer-based, while others provide honorariums.
Why You Should Consider It
We need representation in these spaces and you do not need to have all the answers.
You simply need:
a willingness to share your experiences
an interest in improving healthcare
the ability to reflect on what worked—and what didn’t
People who have:
navigated chronic illness
supported family members through care
experienced barriers in healthcare
advocated for themselves or loved ones
often bring valuable perspectives to these spaces.
Final Thoughts
For many racialized communities, mistrust in the healthcare system did not appear out of nowhere. It was built through experiences of dismissal, exclusion, underrepresentation, and policies created without fully understanding the realities of the people most impacted by them.
Becoming a Patient and Family Advisor does not mean ignoring that history. It means recognizing that lived experience has value and that communities deserve to help shape the systems designed to care for them.
As Robin D. G. Kelley reminds us, “Without new visions we don’t know what to build, only what to knock down.”
As you reflect on your own healthcare experiences, ask yourself:
What would I want future generations to experience differently?
What gaps do I notice in healthcare conversations?
What knowledge, perspective, or lived experience could I contribute?
