Community Voice vs Patient Voice

[Debra Turnbull]

While listening to the podcast that @Amy-Ma had posted, it struck me that we rarely discuss things with a community lens. In one of my college final exams - I had to argue healthcare resources - from a community lens.

Are you able to separate yourself, as a patient, from your community? Are the needs same or different?

[Jenna Kedy 0]

@Debra-Turnbull said in Community Voice vs Patient Voice:

Are you able to separate yourself, as a patient, from your community? Are the needs same or different?

I don’t think I can fully separate myself as a patient from my community and honestly, I don’t think I’m supposed to. My experience is mine, yes, but it’s shaped by everything around me: the system I’m in, the access I have, the barriers others face, and the identities I carry. I walk into appointments as me, but I also walk in as part of a bigger picture. Some needs are definitely the same as we all want to feel heard, believed, and cared for in ways that actually work but the differences are where it really matters. Not everyone has the same access, safety, or ability to advocate for themselves. What works for me might be completely out of reach for someone else so for me, it’s not about separating the two as it’s about holding both at the same time. My story matters, but it’s also a lens. If something feels hard for me, I can’t help but ask; who is it even harder for? And that’s where the real work and real change begins!

[Chris Johnston]

@Jenna-Kedy-0 @Debra-Turnbull

I think you’ve hit the nail on the head with the need to hold both at the same time Jenna.

As individuals, we all view the world through multiple lenses at any given moment - for myself it’s as a woman, a step-mother, an Irish expat, an immigrant, a patient, a sepsis survivor, someone with invisible disabilities, a tech geek, a poet, a caregiver - to name just a few. Some of those lenses overlap with my communities, some don’t. But we also learn throughout life to adopt the lenses of those around us - elderly parents, children with unmet needs, burnt out spouses, struggling neighbours - and it grows to include networks of friends and peers as we become more involved in groups and projects. No individual can ever completely represent a community, but by staying open and involved, actively listening and cultivating a mindful awareness, we can carry those lenses with us. At the very least, it allows us to identify those who aren’t in the room and ask why - and highlight those issues where broader authentic consultation is essential. It also allows us to lean into our networks, to benefit from access to broader perspectives, so that we can hold those lenses alongside our own, and voice needs and concerns at every opportunity.

[Jenna Kedy 0]

@Chris-Johnston Chris I LOVE this as you explained it so beautifully. This is literally how I move through the world too. I’m never just “Jenna the patient partner” as I’m a young woman, a disabled girl, someone with chronic illness, a youth worker, a student, a military spouse, a friend, a cat mom and coffee lover lol and someone who’s been on both sides of systems that worked and ones that really didn’t and all of those lenses show up with me every single time I walk into a room and you’re so right that it’s not about trying to represent everyone because we can’t, it’s about staying open enough to notice who’s missing and being brave enough to say “hey… why aren’t they here?” That’s where the real work starts. I also love what you said about leaning into networks because SAME as so much of my advocacy comes from the people I learn from every day. It’s like carrying a little piece of everyone with me into those conversations. This is the kind of thinking that actually changes systems by not just speaking, but listening wide and showing up with intention!

[Chris Johnston]

@Jenna-Kedy-0 Thanks Jenna! I had an experience recently in a focus group that reminded me of the power of sharing our experiences. The facilitator wanted to 'empower patients to hold healthcare staff accountable in the moment' - which is a lovely concept in an ideal world, but I feel places a significant burden on patients' shoulders when they're most vulnerable. I asked for an added option of anonymous feedback, for those who don't feel safe or empowered to speak up. I shared an experience of a time when I felt empowered to hold someone accountable in a healthcare setting that resulted in physical harm for me - it wasn't life threatening, but it certainly makes me think very carefully about how safe I feel to speak up 'in the moment'. Then two others spoke about being in similar situations with even worse results. The facilitator was genuinely shocked that healthcare professionals could actually inflict harm in response to being questioned by an 'empowered' patient. As a lone voice, I could be easily dismissed, but when others felt free to add their experiences, it became powerful enough to shift the needle towards action. So even in a room full of strangers, we can forge community through sharing personal experience.