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.

[Jenna Kedy 0]

@Chris-Johnston This gave me chills; thank you for sharing it. I’ve been in that “speak up in the moment” space too, and honestly; it’s truly not always safe. When I experienced Septic Shock, there were moments I knew something wasn’t right but speaking up felt risky when I was already so vulnerable. That power dynamic is so real. I love that you pushed for anonymous feedback. That’s what real empowerment looks like; options, safety, and meeting people where they’re at and the way others shared after you is the magic. I’ve seen it too as once one person is brave, it opens the door for truth, and suddenly it’s not just a story, it’s a pattern that can’t be ignored. This is exactly why lived experience matters so much. It changes the room. So grateful you shared this!

[Debra Turnbull]

@Jenna-Kedy-0 @Chris-Johnston
Thank you both for your enlightening perspectives. I forgot about the lens of the young/inexperienced clinician. That 'shock value' is such a teachable moment: for them to learn something completely new, and for patients to realize that clinicians are flawed human beings.

Honestly, trying to keep all three lenses in my head at the same time is difficult. In those moments of fast-feedback ('do this survey') 2 lenses always get forgotten. In a crowd, if you're lucky, sometimes you can find like-minded people. Speaking up alone is risky... and some days, I'm just not that brave.

Thank you both for solidifying my thoughts.

[Kim Locke]

@Chris-Johnston I was in a focus group once and one of the women facilitating the discussion said, "We value the contribution of PWLEs, because they often speak for those that cannot be here to speak."

That really resonated with me, because that's why I became a PWLE in the first place.

I also think that it's important to remember that we're part of the PWLE community, but also so many other communities. We wear many hats as individuals, and to separate that from community is a tough challenge.

In most democratic countries, we focus on the individual, but as I have been learning from the indigenous courses I have taken, they focus on the community. Everyone has a place within the community.

How did we, the non-indigenous, get so far from our communities?

(I can say I have learned this from degus too, everyone has a place in the colony.)

I was listening to a panel on women's health, and one of the panel members introduced herself as her many identities. I thought that was really neat.

[Debra Turnbull]

@Kim-Locke

@Kim-Locke said in Community Voice vs Patient Voice:

introduced herself as her many identities.

I have been seeing more and more of this and how it speaks to the fact that we are sums of many parts. I've tried to think of how I would do that - and stumble many times - but I think that I have summed it up into 4 parts:

I am:
*1) a caregiver
*2) a digital health professional
*3) a Patient advisor, and
*4) a patient.

In that order. Okay, I swap 2) & 3) around sometimes - depending on who I am talking to, but, this is me in a nutshell. I still need to keep practicing.

By presenting ourselves as multi-facetted patients, it communicates out: "Don't clump us alll into one bucket". I have observed some clinicians raise their eyebrows and then lost in thought whenever a speaker presents their multiple identities.

[Jenna Kedy 0]

@Debra-Turnbull Love this reflection so much as this is SO real! Honestly, I feel this all the time too. Trying to hold the patient lens and system lens all at once can be hard as my brain is like… loading… buffering and those quick “fill this out now” moments are also hard as half the time I walk away like “Wait… I had more to say” Also some days I’m just not that brave too and I’ve realized that this work shouldn’t require us to be brave every single time because when I’ve felt safest in care, it wasn’t because I pushed myself to speak up as it was because someone created space for me to. That’s the difference. I love what you said about the clinician lens too as that “shock value” moment is such a two-way learning thing. I’ve definitely had moments where I’m like “oh wow, they’re learning in real time too” You’re not alone in this at all. Even this reflection; this is the kind of thinking that actually makes spaces better!