Case study: cultural context around advocacy

Healthcare systems and how patient advocacy is understood could widely differ in different countries and cultures.

In this interview with Jillian Banfield, Lynn Mendoza shared her insights on how different cultures affects how she seeks care for her daughter when she moved from India to Canada, and her views on advocacy in India.

JB: Your child was diagnosed with a rare disease in India, and you moved to Canada to get better access to a specific medication for your child. Can you tell me a bit about the difference in your experiences between Canada and India?

LM: When I was in India, the word advocacy meant nothing to me. I believed what the doctors I trusted said to me, and when we were with a neurologist who we felt didn’t have our child’s best interests at heart, we switched doctors.

When I came to Canada, I had to convince them that the symptoms my daughter was exhibiting were unusual for her. I needed the paediatrician to refer us to a neurologist – there was no way I could directly get access to a neurologist. The onus of choosing the right treatment plan fell on me as the caregiver – the stress was unbelievable. It forced me to start reading research articles, reach out to other families, and, in general, be more aware. I also quickly learned that I had to be confident and vocal to get care. If I left it up to the doctor’s I probably would never hear back from them. I had to be that squeaky wheel.

LM: I came across the “Family Engagement in Research” course on the Dravet Syndrome facebook site. What caught my interest was, up until then, I was really frustrated with the system and I was contacting doctors and researchers to get more information. It was a sometimes disappointing process and I felt like I was bothering people. So, when I saw this course, I was kind of taken aback because that was not the kind of experience I had of interacting with researchers and clinicians. I immediately jumped for the course, and I saw other researchers were there in the course and they were all very open and welcoming. It gave me a whole different perspective and an idea that there were people working across Canada as patient advocates or patient partners, which was mind-blowing to me. Even though the research projects I became involved with were related to my experiences with my child, it wasn’t exactly about my child either. So, that also gave me a sense of belonging.

LM: In India, people are suffering for so many reasons and there are many systemic barriers, even things like the time they spend commuting, that would make it difficult for them to have time or interest to partner in research. There are also cultural differences, like people also use Ayurveda and homeopathy. I don’t know how research and patient partnership would fit in with these approaches.

There are some really good advocates in India who have started their own organizations and there is an organization focused on rare diseases, so going through those organizations might be how to involve patients as partners.

LM: Collaborating with the doctors would really help. If our doctor had brought us a research opportunity, I would have jumped at the chance because of the relationship I had with her. The relationships that patients have with their doctors can be a strength because patient partnership in research is built on trust.

Patient advocates also need to look after themselves because it can be a lot. Trusting yourself is important. I feel like that’s universal, like the confidence that, hey, you can contribute. You’re not a doctor, but you still have something to contribute.

Lyn Mendoza is a Patient partner committee member, at the Institute of genetics CIHR, Canada