Patients bring real-life experience that can make drug development smarter and more effective. When they’re involved from the start, treatments are more likely to meet real needs and have a greater impact. ACP, a patient-founded nonprofit, is committed to accelerating research to improve the health, healthcare, and quality of life for people with MS. As part of this mission, we collaborate with healthcare organizations to ensure the patient perspective is included in drug development.
There’s no substitute for the lived experience of managing a disease. People living with MS, for instance, offer valuable perspectives on the realities of fatigue, complex treatment regimens, and accessibility challenges.
ACP supports bringing patient and caregiver input into the research process as early as possible – and continuing that engagement throughout. For healthcare organizations, this means embracing a more collaborative approach where patient voices are included from the outset. Doing so can lead to more efficient trials, better recruitment and retention, and stronger treatment adherence. Including diverse perspectives helps spot hidden problems in clinical trials – like issues that could affect participant recruitment, retention, or how a treatment works for certain groups. Ultimately, a more inclusive approach not only improves trial outcomes but also helps advance equity in MS care.
Our work with the healthcare industry has grown as more companies recognize the value of patient input in drug development. We’ve supported efforts like patient interviews, focus groups, and advisory councils, which have led to better data collection tools, clearer study materials, and more culturally sensitive outreach methods.
At the end of 2019, EMD Serono launched a Phase III clinical trial to evaluate the safety and efficacy of evobrutinib (a BTK inhibitor) in adults with relapsing remitting MS. In the year leading up to the trial, EMD Serono partnered with ACP to ensure the full lived experience of people with MS was captured and meaningfully incorporated into the trial’s design and implementation.
As part of this collaboration, eight iConquerMS community members joined a patient-focused drug development council. Throughout the year, the council met several times to share feedback on key aspects of the trial, including which patient-reported outcome surveys to use, whether the questions made sense, if the study design was patient-friendly and what research questions were most important to people with MS.
Quotes included in the boxes below reflect the direct perspectives of people with MS.
“Don’t wait until a drug is almost ready for market to involve patients. Engage with us early in the development process to understand our needs, concerns, and how we define success in treatment. And don’t stop there – keep the dialogue open even after the product is launched.”
In 2023 and 2024, Novartis partnered with ACP to engage a standing patient council in shaping different aspects of its clinical trials. The group met virtually three times a year, with additional online discussions in between. Topics ranged from patient education materials to how clinical trials are designed and communicated.
Each meeting focused on a specific area. Council members shared what mattered most to them – such as key outcomes, unmet needs, and practical concerns around trial participation. Their insights helped Novartis design more patient-friendly studies and improve communication about clinical research, while also giving patients a clearer view of the complexities behind drug development.
Some of the council’s most direct impacts were improving both a patient survey study and a digital e-diary app used in one of Novartis’ clinical trials. For the survey, members helped simplify the language, define acronyms, and enhance visuals like the pain scale to make it easier to understand. They also provided input on the e-diary app, which helped people with MS track medications and report side effects – offering suggestions on format, usability, and clarity. While not all recommendations were adopted, Novartis made a point to share how the feedback was considered and applied.
“Taking part in the Novartis Insights Council showed me/us the simple places where changing the wording a bit made it easier to understand. Just small tweaks could make a huge difference in the patient’s understanding what they need to do.”
ACP also supports one-time engagements alongside its long-term councils. In late 2024, Genentech asked ACP for input on a Phase I clinical trial with a CAR T cell therapy involving a hospital stay, frequent follow-ups, and ongoing monitoring. They wanted to know if people with MS would find this acceptable and what support they might need.
Participant feedback helped shape key aspects of the trial. For example, participants emphasized the need for consistent mental health support, leading to funded social workers at all sites. Concerns about thoracic MRIs being too long and stressful resulted in them being limited to emergencies, and fears around lumbar punctures were acknowledged as a potential barrier to participation.
“How is it possible to design a pharmaceutical trial without the input of probable users of what’s being tested? It’s hard for me to believe that pharmaceutical companies and/or research methodologists don’t know this, and I hope they continue to engage us and listen to us in the process of their research design and testing.”
ACP is also partnering with Adhera Health, a digital health company specializing in AI-powered behavioral science solutions, to develop a mobile app aimed at helping people manage MS-related fatigue. The goal is to engage individuals affected by MS – including family caregivers – with a special focus on reaching underserved Hispanic and Latino communities.
Adhera Health is applying its evidence-based design framework through a series of structured workshops with three demographic groups: white non-Hispanic, Black non-Hispanic, and Hispanic individuals living with MS, along with corresponding groups of caregivers. Each group of six participants is meeting for three 75-minute sessions to provide feedback on the app’s design. The process also includes a product demonstration and a follow-up survey to capture actionable insights.
Recruitment is being supported by ACP’s network, ensuring diverse representation. The iterative feedback process is a cornerstone of Adhera’s user-centered development model – ensuring that the final product reflects the real needs, preferences, and lived experiences of the MS community.
“Use us as we know – intimately – what this disease causes and how it affects us and those around us. We are able, willing and happy to share our thoughts and ideas with you.”
Sanofi has embraced a Patient-Informed Research and Development model, working closely with patients and their communities to better understand their needs and turn those insights into meaningful healthcare solutions. Samantha Reyes is their Patient Engagement Lead in neurology, and she is also a member of ACP’s Minority Research Engagement Partnership Network (MREPN). In her words, “At Sanofi, we involve the patient communities into all elements of our drug development process. Through the creation of a Patient Disease Strategy in 100% of our programs, we bridge science and patient needs by ensuring patient voices are an integrated component of research and development decision-making.”
In 2024, Sanofi requested feedback from ACP about using a new drug delivery service which would be tested in two Phase 3 clinical trials. This was to gauge the advisor’s interest, including review of the proposed device training video and information sheet. The engagement also focused on listening to the patient’s thoughts on AI and exploring a patient app concept. A follow-up collaboration with more iConquerMS community members was scheduled a few months later to dive deeper into the patient app design.
Their input provided a valuable perspective on how the drug delivery device would be innovative, but also provided feedback on possible challenges. Likewise, the advisor’s input on the patient app and how it might fit into patients’ daily lives directly shaped the team’s final decision, demonstrating how patient engagement leads to technology that truly serves the MS community’s needs.
“Ultimately, the more pharmaceutical companies prioritize patient perspectives, the better their treatments will be – and the more trust they’ll earn. This isn’t just about business; it’s about improving lives, and that starts with listening.”
In summary, while progress has been made in including patient perspectives in drug development, the next frontier lies in building deeper partnerships and fostering more inclusive engagement. There are still opportunities to involve patients throughout the entire process, treat them as co-creators rather than consultants, and amplify underrepresented voices. ACP actively supports this by connecting industry partners with a diverse and well-characterized community of people affected by MS. Using iConquerMS’s robust database, we can identify individuals with a wide range of experiences and backgrounds to form diverse, insightful teams – highlighting one of our key strengths in promoting more equitable and patient-centered research. Strengthening the patient voice in these ways will benefit everyone, and we are excited to drive this change!
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