Why Pharma's "Patient Voice" Strategy Is Talking to the Wrong Customer

Direct-to-patient sales are booming - but patient engagement teams still treat patients as data, not customers. A stroke survivor's case for co-design in pharma.

I was sitting in a conference room in London, half-listening to a panel called “The Patient Voice in Action.”

Every speaker on that stage worked in patient engagement. Every single slide was about a drug. Adherence to a drug. Trial recruitment for a drug. A “patient journey” that existed to get someone onto a drug and keep them there. Nobody on that stage had ever been asked what they’d pay for, want, or build, outside of a pill.

I sat there as a stroke survivor whose actual problem — rehabilitation — has nothing to do with medication. And I realised something that should be obvious and apparently isn’t, inside most of these buildings.

You don’t think of me as your customer. You think of my doctor as your customer. I’m the delivery mechanism.

That’s the whole model. Decades of it. The physician decides, the patient complies, and “the patient voice” gets invited in afterward to do testimonials and adherence surveys. It’s not malicious. It’s just how the org chart was drawn a long time ago, and nobody’s redrawn it since.

But here’s the part that should be making your commercial team nervous, not your medical affairs team.

The org chart is already wrong, and the market has noticed before you have.

In the last few months — not years, months — Amgen, Bristol Myers Squibb, AstraZeneca, Genentech, Novartis and Boehringer Ingelheim have all launched direct-to-patient sales programmes. Eli Lilly, Pfizer and Novo Nordisk got there earlier. AstraZeneca Direct went live this year, selling straight to patients at a transparent cash price with home delivery. Lilly’s CEO has openly said the goal is to build something with the staying power of an ecosystem — his word was Apple — that survives the patent cliff because the relationship is with the person, not the prescription.

Read that again. The CEO of one of the largest drug companies in the world is describing the patient as the brand relationship. Not the physician. The patient.

So why does the actual infrastructure — the advisory boards, the “patient voice” function, the entire apparatus built to listen to people like me — still report into medical affairs, still exist to refine a drug that already has a formula, still treat me as a data source rather than a customer with preferences, taste, and a wallet?

I think it’s because nobody’s done the unglamorous work of separating two very different jobs. One job is: what should this molecule do, and how do we prove it. That’s a clinical question, and it should stay close to the science. The other job is: what does this person actually want from their health, their day, their recovery — and would they pay you directly for it if you built it well. That’s a commercial question. And right now, almost nobody with real lived experience is anywhere near the room where that second question gets answered.

David Gilbert has been making a version of this argument for longer than I have, mostly inside the NHS rather than pharma. He puts it more simply than I can: patients are not an add-on to improvement work, he says — we are the work. He’s right, and he’s been right for years, and almost nobody outside patient leadership circles has applied that sentence to a commercial strategy meeting. I’d like to be the one who does.

I want to show you what happens when someone does let the patient answer that question, because the data already exists. It’s just sitting in clinical development, not commercial.

Ten months. Because someone who’d actually lived it was in the room early enough to say so.

Now take that same instinct and point it somewhere nobody’s pointed it yet: not at trial design, but at what gets built and sold.

Stroke rehabilitation has nothing to do with a pill, which is probably why most patient-voice teams have never touched it. But your business development colleagues clearly think differently. That deal didn’t come through the patient engagement function. It came through commercial strategy and data partnerships — the part of the business that’s already quietly figured out that the patient is worth selling to directly. They just haven’t told the patient that yet, or asked what we’d actually want. The company on the other side of that deal recently hired its first dedicated Chief Commercial Officer and is opening what they’re calling a “patient experience lab” in the US. They’re not writing essays about patient-centricity. They’re hiring for it.

I think about what it would have meant to be asked. Not surveyed afterward about my satisfaction with a discharge pathway someone else designed. Asked, before it was built, what I needed to get my brain working efficiently again, what I’d have paid for, what I would have actually used at three in the morning when the fear was worse than the deficit.

Nobody asked. So nobody built it for me specifically. They built something adjacent, aimed at a market they think exists, guessing at what people like me want because guessing is faster than asking.

Here’s the part that should actually worry you, if you’re the one trying to make digital health work commercially. You cannot build a digital product the way you build a drug. A drug gets developed in a straight line — hypothesis, trial, data, approval, done. Digital doesn’t work like that, and every tech company you’re now competing with for the patient relationship knows it. You build a version, you put it in front of real people, you watch what they actually do with it, and you change the thing based on what you saw. Then you do it again. That’s not a nice-to-have process for software. It’s the only process that produces software anyone wants to use twice.

Your own consultants have been telling you this for years, for what it’s worth. McKinsey wrote, back in 2018, that the best pharma companies were starting to launch experiences instead of products, built through agile, iterative design rather than the old linear launch plan. Bain has written more recently that leaders in this space will need agile funding models, not annual budgets, because the pace of patient behaviour now moves faster than the pace pharma is used to planning for. None of that is controversial inside a strategy deck. It just hasn’t reached the floor where patient engagement actually happens.

Which means the patient isn’t a stakeholder you consult once, at a milestone, with a deck already half-built. The patient is the input you need on a loop, continuously, the way every tech company you’re trying to look like already treats its users. Apple didn’t design the iPhone by asking people what they wanted in a focus group and then disappearing for three years. They watched what people did with the thing, and they changed it, repeatedly, in public, in real time.

If you actually want the digital side of this business to work — not the marketing language about digital, the actual product — patient involvement isn’t a box you tick before launch. It’s the design process. Lived experience has to sit at the start, because that’s where agile starts: with the person who’s going to use the thing, not the person who’s going to prescribe it.

Because the moment you actually believe that, the products change. Not the marketing around them. The products themselves.

I’m not asking you to feel something about disabled people. I’m telling you there’s a market sitting in front of you that you’ve structurally excluded from telling you what it wants, and your competitors in digital health have already started building the relationship you haven’t.

The pill was never the whole story. It just used to be the only story you were set up to sell.

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Sources:

1. Fierce Pharma — Pharma clicks with patients as direct sales model shifts marketing strategies (Dec 2025)

2. Klein et al., 2025, The Patient — Patient Engagement Impact Measurement framework (Novartis)

3. PMC — Drug cost avoidance methodology in oncology clinical trials

4. Edison Group equity research — MindMaze precision neurotherapeutics (Feb 2026)

5. MindMaze — commercial leadership appointments and US patient experience lab

6. David Gilbert — patient leadership commentary, LinkedIn · The King’s Fund, on patient leadership

7. McKinsey — From product to customer experience: the new way to launch in pharma

8. Bain & Company — Pharma Commercialization in the Age of AI and Active Patients