The Role of Patient Feedback in Health Innovation

🧠 Last month the BMJ celebrated a decade of its patient partnership, but since then something's been bugging me: Why are we still ignoring the most valuable experts in neurodegenerative diseases—the patients themselves? 🤔 While we've seen pockets of patient involvement, traditional research models often overlook the valuable insights patients provide, bringing them in only as research participants or looking for a rubber stamp on studies designed only by scientists. By failing to keep patients at the centre, we're missing a trick. Here's why: 👀 Real-world insights: Patients live with their conditions every day, which means their experiences provide critical insights that can drive more effective user design. Ignoring these voices means missing out on the real experts. 🎯 Improved clinical outcomes: You can get the science and engineering right, but the patient-centricity wrong, and experience gadgets that gather dust in drawers, prescriptions that go unfilled, and trials with high attrition. We have to involve patients *before* that happens to get the right data to improve outcomes 🔨 Respecting patient-developed innovation: Too often "innovation" is a hammer in search of a nail - but many of the smartest "health hacks" I've seen were developed by patients and caregivers - we should be scaling these rather than always building a new app, a new device, or relying only on the peer-reviewed literature when that's not where these things come from or are documented 😇 Ethical imperative: Patients deserve to have a say in the research that affects their lives. Their participation ensures that research is conducted with empathy and respect for their experiences. There are some savvy organisations that understand this, such as LifeArc MND Insights Group, the Co-Design roles available at Parkinson's UK, Rare Dementia Support Champions programme for co-design, and from the other side of the fence the incredible advocates at Genetic ALS & FTD: End the Legacy who have started transforming the way a whole field thinks about those at risk of genetic ALS/FTD. 💬 I'd love to hear your thoughts! You know the drill: Comment below or shoot me a note to discuss. And feel free to share—it's important to me that this message spreads to the people who need to see it. ♻️

🔥 “𝐖𝐞 𝐚𝐥𝐥 𝐚𝐠𝐫𝐞𝐞 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐞𝐧𝐠𝐚𝐠𝐞𝐦𝐞𝐧𝐭 𝐦𝐚𝐭𝐭𝐞𝐫𝐬… 𝐛𝐮𝐭 𝐚𝐫𝐞 𝐰𝐞 𝐞𝐦𝐛𝐞𝐝𝐝𝐢𝐧𝐠 𝐢𝐭 𝐰𝐡𝐞𝐫𝐞 𝐢𝐭 𝐭𝐫𝐮𝐥𝐲 𝐝𝐫𝐢𝐯𝐞𝐬 𝐢𝐦𝐩𝐚𝐜𝐭?” Yesterday at the first 𝐏𝐡𝐚𝐫𝐦𝐚𝐜𝐚𝐝𝐞𝐦𝐲 𝐨𝐧 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐄𝐧𝐠𝐚𝐠𝐞𝐦𝐞𝐧𝐭 (𝐏𝐄) - by pharma.be - we explored PE across the medicine lifecycle — from early discovery to post-launch. 👉 What stood out: there is still a significant opportunity — especially in 𝐜𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐝𝐞𝐯𝐞𝐥𝐨𝐩𝐦𝐞𝐧𝐭 — to engage patients earlier and more structurally. According to PFMD (Patient Focused Medicines Development) meaningful patient engagement has been associated with: ✅ ~𝟐𝟓% reduction in 𝐬𝐭𝐮𝐝𝐲 𝐞𝐧𝐫𝐨𝐥𝐦𝐞𝐧𝐭 𝐭𝐢𝐦𝐞𝐥𝐢𝐧𝐞𝐬 ✅ up to 𝟖𝟕% 𝐥𝐢𝐤𝐞𝐥𝐢𝐡𝐨𝐨𝐝 𝐨𝐟 𝐥𝐚𝐮𝐧𝐜𝐡 with patient-centric trial designs ✅ 𝟔–𝟗 𝐦𝐨𝐧𝐭𝐡𝐬 𝐚𝐜𝐜𝐞𝐥𝐞𝐫𝐚𝐭𝐢𝐨𝐧 𝐢𝐧 𝐭𝐢𝐦𝐞-𝐭𝐨-𝐦𝐚𝐫𝐤𝐞𝐭 ✅ 𝐬𝐢𝐠𝐧𝐢𝐟𝐢𝐜𝐚𝐧𝐭𝐥𝐲 𝐢𝐦𝐩𝐫𝐨𝐯𝐞𝐝 𝐫𝐞𝐥𝐞𝐯𝐚𝐧𝐜𝐞 𝐨𝐟 𝐨𝐮𝐭𝐜𝐨𝐦𝐞𝐬 impacting regulatory & reimbursement decision-making ❗ 𝑻𝒉𝒊𝒔 𝒊𝒔 𝒏𝒐𝒕 “𝒏𝒊𝒄𝒆 𝒕𝒐 𝒉𝒂𝒗𝒆”, 𝑷𝑬 𝒊𝒔 𝒄𝒐𝒓𝒆 𝒕𝒐 𝒗𝒂𝒍𝒖𝒆 𝒄𝒓𝒆𝒂𝒕𝒊𝒐𝒏. Some examples on where to embedd the Patient Voice in R&D: 👉 Setting 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐩𝐫𝐢𝐨𝐫𝐢𝐭𝐢𝐞𝐬 with patients (e.g. James Lind Alliance work in Cystic Fibrosis in the UK) 👉 Defining the 𝐓𝐚𝐫𝐠𝐞𝐭 𝐏𝐫𝐨𝐝𝐮𝐜𝐭 𝐏𝐫𝐨𝐟𝐢𝐥𝐞: navigating the tension between the “ideal trial patient” to generate evidence and the "real-world population" 👉 Co-creating 𝐭𝐫𝐢𝐚𝐥 𝐩𝐫𝐨𝐭𝐨𝐜𝐨𝐥𝐬 to improve recruitment, diversity and retention 👉 Defining 𝐩𝐚𝐭𝐢𝐞𝐧𝐭-𝐫𝐞𝐥𝐞𝐯𝐚𝐧𝐭 𝐨𝐮𝐭𝐜𝐨𝐦𝐞𝐬 & 𝐢𝐧𝐧𝐨𝐯𝐚𝐭𝐢𝐯𝐞 𝐝𝐚𝐭𝐚 𝐜𝐨𝐥𝐥𝐞𝐜𝐭𝐢𝐨𝐧 𝐬𝐭𝐫𝐚𝐭𝐞𝐠𝐢𝐞𝐬 think #digital #hybrid #continuous For me, this goes beyond theory. As a 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐚𝐝𝐯𝐨𝐜𝐚𝐭𝐞 living with a #RareDisease, I’ve been in clinical trials 𝐟𝐨𝐫 𝟏𝟑+ 𝐲𝐞𝐚𝐫𝐬 — as the only way to access innovation. Clinical research gave me a future. But it also showed me where we can do better. If we want 𝐟𝐚𝐬𝐭𝐞𝐫 𝐢𝐧𝐧𝐨𝐯𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐬𝐮𝐬𝐭𝐚𝐢𝐧𝐚𝐛𝐥𝐞 𝐚𝐜𝐜𝐞𝐬𝐬 across Europe, we need to move from 𝐜𝐨𝐧𝐬𝐮𝐥𝐭𝐢𝐧𝐠 #𝐩𝐚𝐭𝐢𝐞𝐧𝐭𝐬 → 𝐩𝐚𝐫𝐭𝐧𝐞𝐫𝐢𝐧𝐠 𝐰𝐢𝐭𝐡 𝐭𝐡𝐞𝐦 across the full lifecycle. Because when we get this right, it’s a true win-win: ✔ better outcomes for patients ✔ stronger evidence for decision-makers ✔ more efficient development for industry ❤ A sincere thank you for the open exchange to all industry friends - Marieke Parmentiera, Mérédis Favreau, Sabine De Beuf, Katrien Van Geyt, Pieter Van Herck, Ingelise Stringer, Marie-Charlotte Destrée and many others & to an amzing faculty: Koen Raeymaekers Gitte Borgers Willy CNOPS Mitchell Silva, PhD Inge Van de Velde #PatientAdvocacy #ClinicalResearch #Access2Innovation

Patients are being governed by AI systems they had no say in designing, and a new Stanford editorial argues this isn't just an ethics problem. It's a practical one. 1️⃣ Patients are among the primary beneficiaries of healthcare AI tools but are largely absent from US healthcare AI governance processes, which are dominated by clinicians, data scientists, and ethicists. 2️⃣ Patient perspectives differ meaningfully from expert assumptions: clinicians prefer minimising false positives while patients consistently prioritise minimising false negatives, a gap that affects how AI tools are designed and calibrated. 3️⃣ Patients also question assumptions experts rarely surface. In one hospice example, patients challenged why an AI tool was needed when the real problem was poor physician communication. 4️⃣ Three engagement models are described: ad hoc feedback on specific tools, patient representatives on standing oversight committees, and Patient Partner Panels (dedicated standing groups for AI ethics work). 5️⃣ Patient Partner Panels are the most structured model: the Stanford Healthcare Ethical Assessment Lab runs one built on six principles including co-learning, iterative feedback loops, and coequal influence with other stakeholders. 6️⃣ Panels work through focus groups on individual AI tools, asking what patients value about proposed deployments and eliciting their perspectives on core ethical issues. 7️⃣ False negatives in predictive algorithms carry particular weight for patients, who may have greater willingness to question the need for an AI solution altogether than experts tend to assume. 8️⃣ Cultivating a learning community strengthens engagement: standing panels allow patient contributors to deepen their understanding over time, which improves the quality of their input. 9️⃣ Sharing how patient contributions shaped health system decisions, including thought leadership opportunities, sustains engagement and adds accountability. 🔟 Including patients in AI governance is both an ethical imperative and a practical necessity for ensuring AI serves patients' needs and earns their trust. ✍🏻 Michelle Mello, Sudip Nag, Chiquita T Tuttle, Danton Char. Engaging patients in AI governance. BMJ Digital Health & AI. 2026. DOI: 10.1136/bmjdh-2026-000099 | Open Access

Listening to patients is essential. But listening matters most when it changes what happens next. In drug development, patient engagement often begins with sharing: a conversation, an exchange with a patient organization exchange, a protocol review, or a lived experience that challenges how we see the problem. Each can bring an important perspective. Each can sharpen our understanding. But the real opportunity is whether that shared experience becomes a learning that our teams can use to improve development and innovation. Learning that helps us ask a better research question. Learning that shapes trial design or endpoints. Learning that improves the way support is built around a treatment. Learning that challenges how we define success. I remain thankful for the patient advocacy groups and partners who help us continuously improve. Their real-world insights and willingness to challenge our assumptions open our eyes to what we might otherwise miss. Together, they push us to move beyond good intentions, ensuring our actions are always rooted in the actual needs of the patients we serve. That is how listening becomes more than just gathering data. It becomes a shared commitment to co-construction, improving decisions, strengthening development, and designing innovation that is more connected to real life. 💡 How do we make sure patient voices change not only what we hear, but how we innovate? #PatientEngagement   #PatientAdvocacy   #PatientExperience   #Healthcare 

Most health tech companies are over-advised by doctors—and under-advised by patients. If the only people advising your product have never used it, you have a blind spot. Health tech, femtech, and AI startups obsess over medical credibility. So they recruit physicians, researchers, and clinical advisors. All necessary. And none of them are your customer. Patients are the ones who: • navigate care across broken systems • decide whether your product fits into their real lives • abandon tools that add friction—even when they’re “clinically sound” Doctors validate accuracy. Patients validate usability, relevance, and survival value. Without patient advisors: • the “patient journey” is theoretical • pain points are guessed, not lived • value props sound impressive—but don’t stick Medical advisors keep you correct. Patient advisors make you useful. If patients only enter the room after the product is built, you’re not patient-centric. You’re patient-adjacent. This is the work I do with teams before they launch. #HealthTech #FemTech #PatientExperience #PatientCenteredDesign #DigitalHealth #HealthcareInnovation #ProductStrategy #PatientAdvocacy

Patient‑centricity in healthcare has grown up. And that’s a good thing.   In healthcare and life sciences, we’re moving from engagement to co‑creation.   Patients are no longer being “looped in” late. Co‑creation isn’t an occasional workshop anymore—it’s becoming part of trial‑design muscle memory. When patient input is embedded early, clinical trials see ~25% faster enrollment and significantly fewer late‑stage amendments. Decentralized, patient‑friendly designs are also delivering ~20% higher retention. That’s impact—not intent.   The second shift is equally important: we’ve moved from good intentions to measurable outcomes. Patient experience is now treated as an operational lever. It’s measured, tied to KPIs, and discussed alongside timelines, cost, and risk. That signals true maturity.   The third evolution is how we use technology. We’re seeing a move from digital tools for novelty to responsible AI with purpose—designed to reduce patient burden, not add complexity. Simpler protocols. Smarter scheduling. Better listening to patient signals.   Taken together, this marks a fundamental change in mindset. Patients are being recognized for what they truly are— co‑experts in healthcare design, not just end users.   The question for leaders is no longer why patient partnership matters. It’s how deeply we’re willing to embed it into how we work, decide, and build. #PatientCentricity #PatientExperience

Have you ever seen a promising healthcare technology fail? I’ve had the chance to sit in on a few pitch meetings. A groundbreaking solution with the potential to improve patient outcomes is introduced. But as the presentation unfolds, it becomes clear no one had spoken to the end users—clinicians and patients. The workflow doesn’t align with clinical realities, and implementation isn’t feasible for overburdened healthcare teams. Despite its potential, the innovation hits roadblocks because it doesn’t fit the clinical ecosystem. These experiences shaped how I approach healthcare innovation today. It’s not enough to create something transformative on paper. Success depends on understanding the environments and people the solution is designed to serve. Mapping workflows, gathering stakeholder insights, and planning for real-world implementation are critical to ensure great ideas don’t get lost in translation. The next wave of healthcare transformation depends on solutions that truly integrate into the clinical ecosystem. When innovation starts with these principles, it’s far more likely to succeed—and make a meaningful difference. #healthcare #innovation #technology #business #design

When I joined this industry, “patient-centric” was often aspirational—well-intentioned, but without patients truly at the table. That’s why this feels different. I’m proud to share Sanofi’s 2025 Patient Community Promise Report. It reflects a real shift, toward working with patients, not just around them. Patients know their diseases best, and their voice matters at every step. Three years ago, we committed to changing how we partner across the drug lifecycle. Co-created with 80+ patient and caregiver organizations, this report shows that progress: ➡️ 100% of clinical studies informed by patients  ➡️ 85% positive feedback on scientific dialogue (up from 74% last year)  ➡️ 100% of phase 3 indications include patient-relevant label strategies We were the first pharmaceutical company to publicly report on patient engagement metrics co-created with the patient community. That transparency matters because trust is how we accelerate innovation that actually reaches the people who need it.  What means the most to me isn’t just the metrics, it's hearing colleagues say that listening to patients has changed how they think and work. That’s when you know it’s real.  We still have more to do, but this is a meaningful step toward making patients true partners in healthcare. https://lnkd.in/dkc2hZ-p