You have spent nearly two decades in life-sciences patient advocacy, and your own path into this work began with lived patient experience. What did that experience teach you that you would not have learned from the industry side alone?
In April 2005 I injured my cervical spine. Eighteen years and eight surgeries later, a surgical team spent 13 hours rebuilding my neck on May 15, 2023. I call that day my Re-Birthday.
During those same years I carried a bag in pharma, trained reps, and worked market access. I knew the pipeline. I knew the payer mix. I knew the patient journey slide by heart.
The slide lied. Maybe not on purpose. It showed clean arrows from diagnosis to treatment to adherence. Real life runs in loops. You wait. You explain your history again. You leave an appointment and remember the one question you forgot to ask. You decide which symptom to mention because you only have a few minutes.
The industry side taught me how the system works. The patient side taught me where it breaks. You need both views, and most people only ever stand in one of them.
The tagline of Building the Noise is “18 years of pain so you don’t have to.” What is the pain you are referring to, and what made you decide to turn it into a public platform rather than keeping it private?
The pain started in my neck. It did not stay there. Eight surgeries means eight recoveries, eight rounds of explaining yourself, and years of feeling invisible inside a system built to help you.
I kept it private for a long time. Private pain felt safer. It also helped nobody.
At some point I did the math. I had sat on both sides of the table. I knew how the industry thinks and I knew how patients survive. Keeping that to myself felt selfish. Building the Noise exists so the next person skips a few of the dead ends I walked into.
The title says it plainly. Patients need to make noise, and somebody has to show them how.
You describe the patient voice as the most underutilized dataset in healthcare. Why “dataset” specifically? What do you want people to hear in that word choice that they might miss in the phrase “patient voice”?
Because companies fund data. They thank voices.
Say “patient voice” in a boardroom and people nod politely. They picture a moving story at the start of a meeting, then everyone gets back to the real agenda. Say “dataset” and the room changes. Now it needs collection methods, quality standards, an owner, and a budget. Now somebody has to explain why they ignored it.
I define a patient as someone sitting on a lifetime of health intelligence that no textbook can replicate. That intelligence covers barriers, workarounds, side effects nobody logs, and reasons people quit a therapy. It predicts outcomes. The industry just refuses to store it, clean it, and use it.
Words shape budgets. I picked the word that gets funded.
You also said that physicians do not know what their patients do not tell them. Where does that breakdown actually happen? Is it a matter of time, of trust, of patients not knowing what is relevant, or something else?
All four, but the biggest one surprises people. Patients edit themselves.
Time matters. Trust matters. The deeper problem is that patients have no idea what counts as relevant. So they guess. They lead with the loud symptom and skip the quiet one. They leave out the supplement, the missed doses, the fact that they cut their pills in half to stretch a refill. Some of that comes from shame. Some of it comes from not wanting to sound like a complainer.
I did it myself for years. I downplayed pain so I would not look weak. I skipped details because I assumed my doctor already had them.
Physicians work with what walks in the door. When the patient hands over a filtered version, the physician treats the filtered version. Nobody lies. The information just dies in the waiting room.
What does a health system look like when the patient voice genuinely is leveraged? Give us a concrete picture of something that would work differently.
Patients show up before the decisions happen, not after.
One oncology biotech I worked with put its Patient Advisory Council in the room before anyone drafted the trial protocol. The council flagged the enrollment barriers early. The trial ran on schedule, and some sites finished ahead of plan. My estimate of the savings runs from hundreds of thousands of dollars to millions.
A mental health company used patient advocate meetings and advisory boards to map why people never filled their first prescription or never reached a specialist. Those answers shaped the patient support program. Patients ranked it at the top, and the commercial launch avoided the usual access problems.
Now picture that same approach in a health system. Intake asks what matters to you before it asks about your insurance. Discharge plans get tested with patients who went home last month. Nobody calls it innovation. You ask the people living it, early, every time.
Archō’s stated aim is to turn what patients say into programs organizations will actually fund. What usually goes wrong between a good patient insight and a funded program?
Translation. The insight shows up as a story. Finance wants a business case.
Three things kill it. First, timing. The insight lands after the decision, so it becomes a nice-to-have. Second, ownership. Nobody’s budget line carries it, so it floats. Third, the metric. Nobody ties it to enrollment speed, time to therapy, persistence, or formulary position.
Fix the translation and the money follows. At Archō we use a conservative figure of $500,000 in value for every day a drug development program avoids a delay. When a patient insight saves 30 days of enrollment, that works out to $15 million. CFOs understand that sentence.
Our whole aim fits in one line. We turn what patients say into programs organizations will fund.
Through ELAVAY you benchmark advocacy across the life-sciences industry. What have the data shown you that surprised you, or that the industry would rather not hear?
Size does not buy visibility.
ELAVAY 2026 publishes five cuts: overall, diabetes, oncology, rare disease, and mental health. Two more are on the way, autoimmune and HIV/AIDS. Every chart applies a minimum response threshold. A major company can sit inside our study and still fall below that threshold in every published cut.
Think about what that means. Plenty of spend and headcount, a well-known brand, and not enough presence in the advocacy community to show up in the data.
The industry likes to measure advocacy by activity. Meetings held. Sponsorships signed. Booths staffed. ELAVAY measures what the community actually sees. Some companies do not like that mirror. They need it anyway.
Patient advocacy is sometimes dismissed as a communications or reputation function rather than a strategic one. How do you make the case that it belongs in decision-making, and what convinces sceptical leadership?
I stop talking about goodwill and start talking about outcomes.
Here is one example. A rare disease biotech I supported worked with patient advocacy organizations across development, on access barriers and on competing products. When the time came, leaders from those organizations joined the insurer meetings. The product won favorable formulary placement, and the company raised its commercial sales guidance.
Skeptical leadership does not need a speech about empathy. They need to see advocacy show up in the numbers they already track: trial timelines, access wins, launch performance, guidance.
I have watched this business since the BlackBerry era. Every function that earned a seat at the table did it the same way. It proved it could move the business. Advocacy can. Most teams just never learned to show the receipts.
Digital health has produced an enormous amount of patient-generated data: apps, wearables, remote monitoring, patient-reported outcomes. Has that actually made the patient voice more audible, or just noisier?
Noisier, mostly.
A wearable can report my step count, my sleep, and my heart rate. It cannot tell you why I stopped walking in the afternoon, and that is the part that matters. Remote monitoring captures the what. Patients carry the why.
Patient-reported outcomes help when someone reads them and acts on them. Too often they turn into a compliance checkbox. Patients fill out the form, nothing changes, and they learn to stop trying.
More data without more listening only produces a bigger pile. The fix starts with the question. Ask patients what to measure before you build the app.
Where do you see AI helping to surface patient experience at scale, and where do you see a real risk of it flattening or misrepresenting that experience?
AI can read ten thousand patient comments in the time it takes me to read ten. It can spot patterns across forums, advisory boards, and call center notes that no human team could catch. That part excites me.
The risk sits in the average. AI rewards the common answer. Patient experience lives in the outliers: the rare disease patient, the rural caregiver, the person who does not write in English. Summarize them away and you erase the people who need the system most.
The second risk is confident nonsense. Patients already ask AI tools about their health. That is why I built The Patient Standard, a coalition focused on making sure patients get accurate health information from AI systems and that those systems point patients toward real advocacy organizations.
Use AI to find the signal. Keep humans in the loop to protect the outliers.
Our readership includes many people working on patient safety. What role do you think patient-reported experience should play in detecting safety problems that clinical systems miss?
The patient notices first. Every time.
Patients feel the new side effect before it reaches a chart. They see the pattern after the pharmacy switches generics. They know when a device acts differently. Clinical systems catch what someone codes. Patients catch what nobody thought to code.
The FDA already accepts safety reports straight from consumers through MedWatch. Most patients have never heard of it. That gap alone tells you how little we invite patients into safety work.
Safety teams should treat patient reports as early warning, not anecdote. One report reads like a story. Fifty similar reports amount to a signal. Somebody has to connect them.
For a patient reading this who wants to take a more active role in their own care: what are the two or three things that genuinely change the outcome of a consultation?
Three things.
One. Bring a single page. Put your top concern first, then what changed since your last visit, then what you tried. Doctors think faster when you hand them structure.
Two. Say the thing you want to skip. The missed doses. The embarrassing symptom. The pills you cut in half. Your doctor can only treat what you say out loud.
Three. Before you leave, repeat the plan back. Then ask two questions: what happens if this does not work, and who do I call? Bring someone with you if you can. A second set of ears catches what pain and nerves make you miss.
And for a researcher, clinician, or industry professional reading this: what is one thing they could change in their own practice within the next month that would make patient input count for more?
Close the loop.
Before your next big decision, whether that means a protocol, a program, or a piece of patient material, ask three patients one focused question. Write their answers into the decision memo. Then go back and tell those patients what you did with what they said.
That last step matters most. Patients stop sharing when their input disappears into a void. Show them it counted and they will give you more, and give it more honestly.
It costs you a few phone calls and one paragraph. It changes the relationship.
Looking five years out, what would tell you that this shift is actually happening, and what is your honest assessment of whether it will?
Watch the org chart and the budget.
I will believe it when patient insight shows up as its own line item. When Chief Patient Officer roles report into the C-suite with real authority. When boards ask about advocacy performance the same way they ask about market share. When benchmarks like ELAVAY become standard reading before launch planning.
My read: it will happen, unevenly. Rare disease already moves this way because those companies cannot succeed without patient communities. Large primary care brands will drag their feet longer.
Here is what I am building toward. I sit inside pharma companies as the patient’s voice, prove it changes outcomes, and build a role that outlasts me. If that role still exists after I leave the room, the shift is real.
Is there anything else you would like to share with our readers that these questions have not touched on?
To patients: you are not a passive recipient of care. You hold intelligence no chart captures. Use it. Speak up early, and speak up often.
To everyone inside the system: the patient in front of you gave up a lot to get there. Time off work. A ride. A copay. Hope. Treat what they tell you like the most valuable data you will collect that day, because it probably is.
I am finishing a book called Unseen. The title says what I lived for 18 years. My mission now is simple. Nobody should feel unseen inside the system built to care for them.
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Interviewer: Prof. Atanas G. Atanasov
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Matt Toresco is the founder and chief executive of Archō Advocacy, a life-sciences consultancy working with pharmaceutical and biotechnology organizations on patient advocacy strategy, and editor-in-chief of the industry benchmarking study ELAVAY. He hosts the Building the Noise podcast and founded The EMPWRD Patient Foundation in September of 2026. EMPWRD was founded to develop tools, resources & education for patients, caregivers and advocacy organizations to meet the gaps identified in Matt’s market research and personal experience as a patient. After a 2005 cervical spine injury led to eighteen years of treatment and eight surgeries, he now works at the intersection of industry and lived patient experience. His TEDxCharleston talk has been viewed more than a million times.