Addressing Power Dynamics and Hierarchies: Rationale for Providing a Decision-Making Checklist to Patient Research Partners

Introduction

Incorporating patient research partners into academic studies is a page taken out of the community-based participatory methods playbook. Oddly enough, that's an origin story that doesn't get much airtime. Originally, these methods were designed to disrupt the status quo by creating knowledge outside the walls of traditional institutions. So, when you bring this approach into academia, you're walking into a bit of a paradox.

Here's the rub: Many of us researchers worry that by bringing patient partners into the institutional setting, we risk turning them into "professionals" in the academic sense. The fear is that their unique voices will gradually be moulded to fit the existing narrative, reinforcing the status quo rather than questioning it. That's why we need to double down on making our research not just inclusive but truly centred on the perspectives of patients, clients, family members, and the community—or PCFC for short.

Switching from a top-down, 'we-know-best' research model to a more collaborative partnership is easier said than done. The road is full of obstacles, with power imbalances and ingrained hierarchies being among the biggest. This is where a comprehensive decision-making checklist I’ve made for patient research partners comes into play. The checklist isn't just a formality; it's a crucial tool for making these partnerships as equitable as possible. NOTE: The checklist is only a starting point; from there, you begin to co-create WITH your co-partners. Let's dive into why this checklist is a game-changer for balancing power and breaking down hierarchical barriers.

Empowering Patient Research Partners: Grabbing the Mic

In most old-school research settings, patients are often relegated to the role of passive guinea pigs (ugh!). The people in lab coats (when most people think “science” they think lab coats and test-tubes) make the rules, and PCFC' voices are an afterthought. Let's shake that up. A decision-making checklist gives patient research partners a tool to carve out their own space in this research jigsaw puzzle. It's like handing them a mic in a crowded room full of experts and saying, "Your voice matters too."

Transparency and Accountability: No More Smoke and Mirrors

Ever feel like the world of academia is wrapped in layers of jargon and red tape? You're not alone. The higher-ups hold all the cards and information, keeping those at the grassroots in the dark. A well-crafted checklist cuts through that fog. It's like turning on a spotlight, showing every tiny decision that shapes the research. This way, researchers have to be clear and honest about how patient partners can pitch in.

Facilitating Meaningful Contributions: Finding Your Sweet Spot

Imagine stepping into a bustling kitchen with no idea what's cooking. Overwhelming, right? A checklist organizes this chaos. It labels each part of the research process, indicating where your input would be golden. If something's already set in stone, it'll say so (BTW find out WHY it’s set in stone, and research partners, make sure you’re okay with that). Otherwise, your voice is equal to every other voice in the room, and your input drives the decisions for this research. You’re not just coming along for the ride, we’re all taking turns in the driver’s seat on this road trip! So, this checklist is especially handy for those new to the research rodeo, helping them pinpoint where they can make the biggest impact.

Enhancing Communication: Speaking the Same Language

Here's a common hiccup: researchers and patients often speak different dialects—the formal lingo of academia versus the real-world language of patient experience. A shared checklist acts as a translator, a conversation starter that helps both sides understand each other's expectations and perspectives. Think of it as the Rosetta Stone (aka Duolingo?) of research collaboration.

Addressing Ethical Considerations: Doing the Right Thing

Just inviting patients to the table isn't enough! If it’s truly a partnership, we need to create the table together. Or if you like, it’s like a pot-luck where we all bring something. To really make this partnership ethical, we have to tear down the structures that keep inequality in place and we have to be really thoughtful about this because sometimes these structures are invisible and hidden so they are easy to miss. This checklist puts every decision under a microscope, offering a constant reality check on whether we're really being as inclusive and ethical as we claim to be. It acts as a moral compass, guiding us towards research that's genuinely focused on patient needs.

More Than Just Checking Boxes

Let's be clear: this checklist isn't some bureaucratic hoop to jump through. It's a critical tool for creating transparent, equitable, and meaningful research. It acts as a roadmap, guiding patient research partners through the labyrinth of academia and giving them the power to influence the research that directly impacts them. With this checklist, we're not just paying lip service to the idea of collaboration; we're taking concrete steps to make research a truly shared endeavour.