The Streets Were Designed to Confuse You

Why Patient Voices Are Missing From Research Design

I just learned something while touring through Lisbon’s Alfama district that stopped me in my tracks—literally and figuratively.

The narrow, winding streets that make this medieval neighborhood so impossibly charming? They weren’t designed for residents’ comfort. They were designed to confuse invaders. To slow them down. To protect the rulers in the castle on the hill.

For centuries, people lived in this labyrinth not because it made their lives better, but because it made someone else’s life safer.

I kept thinking about that as I climbed the steep cobblestones, as I hit dead ends and had to backtrack, as I watched tourists and residents alike struggle with navigation. The system worked—militarily. The castle remained defensible. But the people living in those confusing streets paid the price in daily inconvenience, poor sanitation, disease vectors, and compromised quality of life.

And then it hit me: This is exactly what’s happening in medical research.

The Maze We Built

The parallel isn’t perfect, but it’s haunting. For decades, centuries, really, medical research has been designed the way those medieval streets were: by people in power, for people in power, with little to no input from the people actually living inside the system.

Researchers design clinical trials. Pharmaceutical companies optimize protocols. Institutional review boards approve them. Hospital administrators implement them. And the patient? The person whose body will be the subject, whose life will be disrupted, whose survival might depend on the decisions made in those rooms?

They’re told where to show up and when to show up.

The protocols are written to be efficient for the system, not usable for the person. A patient needs to come in monthly for six-hour monitoring visits. Great for data collection. Devastating if you can’t afford to take time off work, don’t have childcare, or live three hours from the hospital.

Inclusion criteria are narrow, wonderful for statistical purity. Catastrophic if you have comorbidities, take other medications, or fall outside the demographic boxes researchers checked. You become “ineligible” not because the treatment won’t help you, but because you complicate the narrative.

Trial endpoints are chosen by researchers, outcomes that matter for publication, for regulatory approval, for career advancement. But what if the outcome that matters most to you—the ability to work, to be present with your family, to not spend every day managing side effects—isn’t being measured?

You’re living in the confusing streets. But you weren’t invited to help design them.

The Cost of Decisions Made Without You

Here’s what happens when research decisions are made for patients instead of with them:

We optimize for the wrong things. A trial might show a 15% improvement in progression-free survival but cause neuropathy in 40% of participants. Researchers celebrate. Patients suffer. No one asked patients what tradeoff they’d actually accept.

We miss critical problems. A protocol that requires weekly infusions sounds “efficient” until a transplant patient (like me) realizes the immunosuppression complications aren’t even on researchers’ radar. A trial design that excludes people over 75 might be statistically cleaner, but it abandons the population most likely to need the treatment.

We build inequity into the foundation. The patients who can afford to travel to trial sites, who have employers flexible enough for medical appointments, who speak the language of clinical research—they get in. Everyone else gets left out. The system works perfectly. For some people. Not others.

We measure what’s easy instead of what matters. It’s easy to measure a biomarker. It’s harder to measure whether someone can still play with their grandchildren, work the job they love, or feel like themselves. So we don’t. And then we’re shocked that patients refuse treatments with “good data” because those good numbers didn’t account for the parts of life that make it worth living.

The Research Advocacy Movement

But there’s a different path.

Over the last decade, something has shifted. Patient advocates, people like me, people living with the disease, people who understand the stakes not from a textbook but from a diagnosis, are being invited into research design conversations. Not as subjects. As partners.

When patients help design research, things change:

• We ask different questions. Not just “Does this drug work?” but “Will someone with a job and a family actually be able to do this trial?”

• We measure what matters. Quality of life. Symptom burden. Functional capacity. The things that determine whether you’ll actually stick with treatment in the real world.

• We catch blind spots. Researchers don’t think about things they’ve never lived through. When you bring together oncologists and patients with metastatic disease, geneticists and people navigating rare disease diagnosis, pharma scientists and caregivers managing daily treatment logistics, you catch problems that would have derailed everything.

• We build equity in. When diverse patient voices are in the room from day one, you design for the single parent working two jobs, the patient without transportation, the person with medical trauma who needs extra support. You don’t design around them. You design for them.

This is research advocacy. And it’s not a nice gesture. It’s essential.

I serve on patient advisory councils. I’ve contributed to research design conversations. I’ve reviewed grant proposals through CDMRP. And every single time, I’ve watched patient advocates fundamentally shift what research gets done, how it’s measured, and whether it will actually matter when it reaches a real person trying to survive.

Your wisdom belongs in that room. Not because you have a degree in oncology. Because you live with the stakes.

From Patient to Advocate

Here’s the uncomfortable truth: The system still isn’t designed with you in mind. The maze is still confusing. The streets still belong to those who built them.

But you don’t have to navigate it alone. And you don’t have to stay silent.

In my book, From Patient to Advocate: Turning Survivorship Into Impact, I walk through exactly how to do this. How to move from “I was diagnosed” to “I’m shaping the research and care systems that will help the next person.” How to understand the landscape of patient advocacy—the organizations, the opportunities, the ways your voice matters.

Because here’s what I learned: The wound becomes the wisdom, and the wisdom becomes the work.

Your diagnosis, your treatment, your survival—that’s your wound. The insight you’ve gained from living through it, the questions you ask, the problems you see in systems designed without you, that’s your wisdom. And the work is taking that wisdom into the rooms where decisions get made.

Whether it’s:

• Joining a patient advisory council for the organization researching your disease

• Becoming a peer reviewer for grant funding

• Speaking at conferences about what research needs to account for

• Contributing to protocol design so trials are actually doable for real people

• Advocating within your medical team for outcomes that matter to you

• Or simply telling your story in a way that helps researchers remember: this is a person, not a data point

All of these are research advocacy. All of them matter. All of them require the same thing: Your voice, saying what needs to change.

The medieval rulers didn’t ask residents how to design the city. The system worked for them. It’s taken centuries to realize it didn’t work for anyone else.

We don’t have centuries to wait for research to figure this out. Patients are being diagnosed right now. Treatments are being designed right now. Decisions that will shape someone’s survival are being made right now—in rooms where patient voices are still sometimes absent.

You have wisdom from your wound. The question isn’t whether you should advocate.

The question is: Will you?

Ready to Start Your Advocacy Journey?

If this resonates, if you’re ready to move from patient to advocate, to understand how your experience translates into impact, to find the entry points that match your skills and your story, I’ve written a guide.

From Patient to Advocate: Turning Survivorship Into Impact is available now.

It’s a practical, unflinching look at:

• How to identify where your advocacy can matter most

• The landscape of patient organizations and where you fit

• How to speak with authority about your experience (because you do have authority)

• Real stories of advocates who moved from diagnosis to impact

• Concrete steps to start or deepen your advocacy work

• How to sustain this work without burning out

Paperback: Available through Amazon and independent booksellers
eBook: Amazon Kindle and other platforms
Link to Amazon

Because the wound becomes the wisdom. And the wisdom becomes the work.

The question is whether you’ll do yours.

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What was your path to advocacy? Are you thinking about stepping into this work but unsure where to start? Reply in the comments—I read and respond to every one.

Tim McDonald is a Community Manager, patient advocate, and author of From Patient to Advocate. He serves on multiple patient advisory councils, co-hosts the Advocacy at Work podcast, and helps patients find their voice in research and care systems. This post is part of the Advocacy at Work project—turning survivorship into impact.