Sharing my health-care story: a patient advisor and member of the FLA OHT

I have lived in this part of Ontario for 25 years, stumbling my way through appointments and referrals, searching for clear diagnoses and effective treatment for multiple conditions. After long waits, each specialist examined a specific body part, not my wholeness as a human sitting in the same room. A few practitioners retired, died or moved to other communities so I had to repeat my health care story to the new ones. Until recently, most of my medical interactions were with able-bodied providers who did not share my gender identity.

Very little about my medical journey as an adult has been straight-forward so I became a strong self-advocate by documenting my own medical history and double-checking the details of every test and report. You could say my experience has been patient-centred because I am the patient doing a lot of work!

I am fortunate to have an amazing family doctor who has shown me actual care not just treatment. New options such as email, telephone and video have been high quality, more convenient and a lower cost to me compared to driving to a health care provider and paying for parking. Most importantly, virtual care has been safer for me during outbreaks of highly contagious diseases. 

Reimagining health care as human-centred requires tough questions:

• What makes health care excellent or awful for you, me and everyone we know?

• How could this community offer safer and more inclusive care to individuals who are racialized and marginalized?

• How does this community build in more prevention and accountability to reduce the number of confusing and potentially dangerous medical practices that some of us have experienced?

This is what the new FLA OHT is working hard to address. It’s a unique opportunity to design human-centred health care, from the inside out, for everyone in this community.

 What are your health care stories? What matters to you when designing the system we wish to have?