SPEAKERS:
- Danuta Marchi, Global Head of Patient Engagement & Advocacy, UCB
- Iria Gala, VP, Digital & Customer Engagement, Novo Nordisk
- Lisbeth Oxholm Snede, President, PiCC United
- Lena Förster, Principal, Temedica
- Mark Duman, Patient Engagement Pioneer, MD Healthcare
KEY TAKEAWAYS:
- Journey architecture, not channel architecture, determines whether digital engagement produces outcomes
- Fragmented app ecosystems replicate the silo problem they were designed to solve
- Time-to-therapy fell 50% when MS patient segmentation followed journey logic, not product logic
- Feedback reciprocity including returning data and outcomes to patients, is the mechanism that sustains engagement over time
- Patient engagement as an organizational behavior, not a departmental function, separates leaders from laggards
Pharma has spent a decade building the infrastructure for patient engagement, including apps, omnichannel programs, patient support platforms and digital companions. The investment is real and the intention is genuine. What emerged at Pharma 2026 is that the investment may be compounding the problem it was designed to solve.
The paradox was stated plainly by Lisbeth Oxholm Snede, President of PiCC United, before the panel had moved past introductions. "We need to stop treating patients like they are experience channels," she argued. "We have to stop from the system side to keep working on channels and keep working on the apps and the platforms because this is not the way the patients experience." That framing, that patients as the subjects of a journey, not the objects of a channel strategy, ran as an undercurrent through every case study, quantitative outcome, and organizational example the panel produced over the following hour.
The discomfort in the room was productive. These were not critics of digital health. They were it’s practitioners.
When Journey Logic Replaces Channel Logic
The most concrete evidence on the table came from Lena Förster, Principal at Temedica, describing a program built in partnership with Roche targeting newly diagnosed MS patients in Germany. The baseline problem was stark. "In Germany, time to therapy right now for someone with MS who's newly diagnosed and untreated takes 9 to 12 months, and in Europe it's actually 13 to 14 months," Förster explained. "So a significant time which is in a way wasted."
Nine to fourteen months of untreated MS is a structural failure in how the patient's experience from diagnosis to treatment initiation is organized, or more precisely, how it isn't. Temedica's response was to map the friction points explicitly, then build engagement sequences around them rather than around the product or the platform. Patients were segmented not by demographic profile but by journey state: newly diagnosed and untreated, knowledge level, channel preference. A newly diagnosed patient received a peer narrative first, not a clinical brief, followed by myth-busting content, then a checklist for the neurology appointment. The sequence was designed around the patient's next decision, not the company's next message.
The result: time to therapy decreased by up to 50%. Förster was careful to contextualize the channel itself. The program runs via an app that currently reaches 12% of all MS patients in Germany, a figure that sounds modest until you consider what that penetration means in a defined patient population. But she was equally clear that the app was not the intervention. "I'm not focused about the app. I'm actually focused about the journey which we take the patients on."
Iria Gala, VP of Digital and Customer Engagement at Novo Nordisk, reached the same conclusion through a different route. Working previously in diabetes care, she described deploying a program across more than 20 countries that delivered across all three validation layers simultaneously. "For the financial, we were able to reduce unscheduled visits, so it made sense for the government. For the clinical, we were able to reduce the HbA1c, so yes, we made the clinical check. But for me, what was far away more important was for the patients: we increased the quality of life." The program didn't succeed because the app was well-designed. It succeeded because the program's architects had first understood what the journey actually meant to patients. That understanding came from a single conversation with a father of a diabetic child, who told Gala the question that mattered to him had nothing to do with glycemic control: "For me it is what is going to make me decide if my son is going to go to a summer camp or not. For me that was mind-blowing and I started seeing things in a totally different manner."
The Reciprocity Gap No One Has Solved
Journey logic requires something most channel architectures don't deliver: feedback. Patients who contribute to clinical trials, advisory boards, or real-world data programs operate on an implicit contract. If that contract isn't honored, the engagement infrastructure loses the one thing it cannot engineer: trust.
Snede drew on her work with cross-border clinical trial access to identify the mechanism precisely. "Patients are willing to do a lot, but if they are not communicated to and they don't get feedback, you lose them." The finding came from studying both patients rejected from trials and those who had participated multiple times. What distinguished sustained engagement from dropout was not the trial design or the therapeutic area. It was whether the system closed the loop.
Danuta Marchi, Global Head of Patient Engagement and Advocacy at UCB, acknowledged that pharma has not yet solved this, even at companies with genuine commitment to the principle. "That's at least my view, to get the patient back their clinical trials data. Really concretely, how did they perform, or how did the body perform on a given treatment or placebo. That's something that we are currently exploring and advocating for internally with relevant functions. Because I think we also owe that to patients, they dedicate their time and their lives to help us." The phrase "advocating" is doing real work there. The barriers are organizational. Functions that receive patient data and functions responsible for patient relationships are seeking greater alignment around a shared obligation to return value.
Duman pressed on this by referencing Pfizer's public commitment to return trial results to participants. Whether that standard has become industry norm, or remains exceptional, went unanswered, which itself answers the question. The Temedica-Roche MS program produced a peer-reviewed publication on treatment initiation patterns, with patients as co-authors. Duman's follow-up, that were patients co-authors?, was spontaneous. Förster's confirmation that they were landed as notable precisely because it wasn't assumed.
Discover more on this topic at Pharma Commercial Data & Tech Europe 2026 (4-5 November, London) Europe’s collaborative home for data and tech pioneers. Visit the website here.
Fragmentation Is the Product of Silo Thinking
The practical consequence of building channel architectures rather than journey architectures is that patients end up navigating a fragmented ecosystem that replicates the silo structure of the organizations that created it. Snede made this concrete with an analogy that stopped the room. "Can you imagine that you have to go through an app to order that drink, and then you need to go to the toilet and you also have to use an app to book the toilet, and so on and so on. Patients have hundreds of them."
The image is deliberately absurd. The operational reality it describes is not. A patient managing a chronic condition in 2025 may interact with a pharma company's patient support app, a hospital patient portal, a pharmacy platform, an insurance pre-authorization system, and a disease advocacy organization's resource hub, none of which communicate with each other, none of which know what the others have already asked the patient to do.
Duman framed the channel proliferation question directly: "Are we relying too much on digital? Are we putting too many eggs in one basket?" Gala's answer was calibrated. "You need digital, but you don't need digital for everything. And I think that we didn't find the right piece of the pendulum." The observation is accurate as far as it goes, but the pendulum metaphor implies a calibration challenge, how much digital versus how much human. The harder problem is architectural: even a perfectly calibrated digital-human mix, if it remains organized by channel, will still fragment the patient experience across organizational boundaries.
Förster's response pointed toward the solution. "It's all about dynamic patient profiles. It comes down to: it depends, because every patient has different preferences, different priorities and we need to meet them where they are." Dynamic profiling is the mechanism that makes journey logic operational at scale. Instead of routing patients to predetermined channels, it routes channels to patients based on where they are in their journey and what they need next. The data infrastructure required for that is significant, but Temedica's platform architecture, one hub, multiple therapeutic areas, consented data collection feeding personalized guidance, demonstrates it is buildable. Snede described a parallel initiative in Denmark, where a national committee is working toward a single platform that consolidates everything from organ donation consent to clinical trial enrollment, so that patients have one place to go rather than a different portal for every organization they interact with.
The Organizational Architecture Behind the Method
What separates the companies producing the outcomes described in this session from those still optimizing channel metrics; it is an organizing principle about who owns patient engagement and what that ownership requires.
Marchi described UCB's approach with a precision that signals genuine organizational commitment. "We consciously distinguish patient engagement, which is a team, and engaging with patients, which is everyone." A dedicated function sets standards, builds methodology, and manages external partnerships. The expectation that everyone at UCB will engage with patients means patient insight isn't filtered through a single team before reaching decision-makers. It reaches them directly. That architecture is what makes patient engagement a strategic input to target product profiles rather than a communications task applied to products already in late development.
"Patient engagement really starts with listening, listening deeply and listening to understand," Marchi argued. "And that starts from the earliest stages, the target product profiles. And it really begs the question: what is success for whom and according to what definition?" The pre-channel question, what does success look like for this patient population before we decide how to reach them, is one most organizations skip. They start with the channel because the channel is visible, measurable, and fundable. The listening infrastructure that should precede it is harder to budget and harder to attribute.
Gala's closing principle was sequencing rather than scope. Identify the single most concrete friction point for a specific patient cohort and solve that first, building adherence and trust before expanding. She recalled a Crohn's patient who named their primary need as knowing where to find a public bathroom without having to explain themselves. That problem is solvable. It doesn't require a platform. It requires that someone asked the right question.
The organizations closing the gap between patient engagement investment and patient engagement outcomes are not the ones with the most sophisticated channel architecture. They are the ones that built the journey first and let the channels follow. That difference shows up in a 50% reduction in time to therapy for MS patients in Germany. It also shows up in a father deciding his son can go to summer camp. Pharma that cannot connect those two data points is still thinking in channels.
To get you highlights of Pharma 2026 faster, we are using generative AI technology to summarise the transcripts of the sessions. If you have any feedback about the summary, please contact lucy.fisher@thomsonreuters.com.
Discover more on this topic at Pharma Commercial Data & Tech Europe 2026 (4-5 November, London) Europe’s collaborative home for data and tech pioneers. Visit the website here.
