What patients have taught me.
There is so much patients learn about managing their conditions that we simply don't learn in medical training. This page is where I collect that wisdom — practical, hard-won, and too important not to share.
"Patients are the most underutilized resource in health care. We are surrounded by patients and need to take advantage of this incredibly valuable population."
— Dr. Deanna Attai
Some patients are patients. They show up, receive care, recover, and move on. That is enough — more than enough.
But some patients become something else. They become advocates — not just for themselves, but for the people who will come after them. They build communities. They document what works and what doesn't. They push back on systems that fail them. And for the clinicians willing to listen, they become educators in the most meaningful sense: people sharing knowledge that cannot be found in any textbook, because it comes from actually living inside a condition.
This page is a record of what I've learned from those patients — and a way of naming what they contribute. The gap between what medicine teaches and what patients know is real. Closing it starts with listening.
Pro Tips I've Learned from Patients
Every one of these came from a patient, a patient advocate, or someone living with a condition who figured something out the hard way. I share them here with gratitude — and because listening to patients makes me a better surgeon.
Patients with HS have built a product toolkit that medicine hasn't caught up to yet.
HS is one of the most challenging conditions to manage — flares are unpredictable, the pain is real, and patients often feel like they're navigating it alone. What I've learned from the HS community is that patients have developed incredibly practical, experience-tested routines involving specific soaps, wound care products, clothing choices, and daily habits that genuinely help.
These are not things taught in surgical training. They come from years of trial and error, from community-building, from people sharing what works without gatekeeping. As a surgeon who operates on HS, this kind of lived knowledge is invaluable to me — and it should be part of how we care for these patients.
If you have HS, I encourage you to seek out patient communities. And if you're a clinician, listen to what they've already figured out.
Patients living with obesity carry a weight that goes far beyond the clinical — and they've been telling us, if we'll listen.
I co-moderated an obesity-focused Twitter chat, and what patients shared stopped me in my tracks. Story after story of being dismissed, shamed, and told their symptoms were just about their weight — by the very people they came to for help. Weight bias in healthcare is real, it's documented, and it causes harm.
The Obesity Action Coalition has been collecting and amplifying these patient voices for years. Stories like Tara's — standing up to weight bias in healthcare — describe experiences that patients navigate alone, without the language or support to push back. Reading them is clarifying: the problem isn't patients. It's the culture of medicine that made them feel like it was.
If you treat patients with obesity, read the OAC community stories. Not for clinical education — for humility.
Burn survivors have built one of the most powerful patient advocacy communities in medicine — and clinicians should be paying attention.
Burn patients navigate an extraordinarily complex recovery — physical, psychological, social — that extends years beyond the acute hospitalization. What the burn survivor community has done in response is remarkable: they've organized, shared their stories, supported each other through peer networks, and actively shaped how burn care is delivered.
The Phoenix Society for Burn Survivors has been at the center of this since 1977 — connecting survivors and families, running peer support programs, and hosting the annual World Burn Congress where nearly 900 survivors, families, and clinicians come together. Their library of over 350 survivor stories is a resource every burn care provider should read — not for clinical guidance, but for understanding what recovery actually looks like from the inside.
Burn patients are extraordinarily good advocates. They've had to be.
Voices Worth Following
These are patient advocates who have shaped how I think about the clinician-patient relationship — and who every healthcare provider should know.
e-Patient Dave
Dave deBronkart survived a rare, late-stage kidney cancer — and emerged as one of the most important patient empowerment voices in medicine. He coined the term "e-patient" (engaged, empowered, equipped, enabled) and has spent years advocating for patients' right to access their own health data, participate actively in their care, and be treated as partners rather than recipients.
His work is a reminder that the most informed person in the room about what it's like to live with a condition is almost never the clinician.
Clinicians Who Care — Dr. Bayo
Dr. Bayo spent years having her lupus symptoms dismissed before finally receiving a diagnosis. Rather than simply moving on, she built something: a crowd-sourced, publicly searchable list of clinicians who listen — nominated by the patients they've helped. As featured in People Magazine, the list grows every day.
This is what patient advocacy looks like when it becomes infrastructure. Not just sharing a story, but creating a resource that changes how the next patient finds care. If you're a clinician who truly listens, you might already be on this list — and if you know one, you can add them.
The MBC community didn't just raise awareness. They demanded that awareness actually mean something.
Metastatic breast cancer patients — stage IV, incurable — spent years watching pink-ribbon campaigns raise hundreds of millions of dollars while research funding for their disease remained a fraction of the total. So they pushed back. They organized. They named the gap explicitly. And the field started to shift.
Organizations like the Metastatic Breast Cancer Alliance and Living Beyond Breast Cancer's Hear My Voice program now place patient advocates inside scientific conferences — including the San Antonio Breast Cancer Symposium — as panelists and speakers, not just attendees. This is patient advocacy reshaping a field in real time.
There's a clear surgical dimension too: decisions around mastectomy, reconstruction, and prophylactic surgery in BRCA+ patients are among the most personal a patient makes — and patient voices have significantly shaped how surgeons approach shared decision-making in these conversations.
IBD patients know their disease in ways that take clinicians years to learn — and they've built a community to prove it.
Inflammatory bowel disease is unpredictable, misunderstood, and frequently requires surgery — colectomy, ostomy, strictureplasty. The patients who live with Crohn's and ulcerative colitis have developed extraordinary expertise in managing their own disease: tracking flares, navigating medications, advocating for themselves in emergency rooms, and — crucially — supporting each other through surgical decisions that are among the most life-altering in medicine.
The Crohn's & Colitis Foundation has become one of the most effective patient advocacy organizations in medicine, with over 1.2 million patients served annually and a robust program of advocacy stories that document what it actually looks like to live inside this disease. If you operate on IBD patients, read them.
PCORI funds research where patients don't just participate — they help design the questions.
The Patient-Centered Outcomes Research Institute (PCORI) was created on a radical premise: that research is only as useful as it is meaningful to the people it's supposed to help. Patients and caregivers are involved not just as study subjects but as co-investigators, helping determine what gets studied and how outcomes are measured.
The surgical perspective here is real. PCORI has funded research on older adults navigating high-risk surgical decisions, patient-centered care transitions after surgery, advance care planning before major cancer operations, and — as of 2026 — a collaborative with pediatric surgical oncology researchers designed explicitly around patient priorities. This is what happens when patients are treated as partners in the scientific process.