Voices of Value: Exploring Patient Preferences and PPI’s Impact at MDIC’s Annual Patient Summit

This article is part one of a series recapping key insights from the Annual Patient Summit. Stay tuned for part two, where we’ll continue exploring medical device industry efforts shaping the future of patient-centered medical device development.

For years, healthcare has prioritized clinical data while under-utilizing the real, lived experiences of patients. At this year’s MDIC Annual Patient Summit, that approach was put to the test. Patients, caregivers, and researchers came together to address how Patient Preference Information (PPI) is reshaping medical device development. In powerful, firsthand accounts, participants shared how PPI drives meaningful improvements in clinical trials, device design, and patient outcomes. These discussions underscored the potential of PPI to refocus healthcare on what patients truly value in their care, creating solutions that better align with their lives and needs.

Putting Patients in the Driver’s Seat of Research

A focal point of the summit was the patient panel where patients and caregivers shared personal experiences with preference studies. Panelist Christine Waggoner, founder of Cure GM1 Foundation, offered a heartfelt account of why her organization initiated a patient preference study for GM1 gangliosidosis, an ultra-rare condition impacting her own family. “We wanted to represent the true feelings of the patients in the community,” Christine explained. “Our disease has multiple systems involved, and we saw sponsors focusing on cognitive measures, but for our community, quality of life metrics like behavior and pain management are crucial.”

Christine’s study was designed to capture these overlooked aspects, and the team went a step further to make the results widely accessible. “We made sure that no patient or family would have to pay to see the publication,” she said, reinforcing her commitment to both transparency and patient empowerment. Her experience set the stage for a larger discussion on how patient-driven research brings new dimensions to device design by highlighting aspects of health that are most meaningful to patients.

Navigating the Complexities of Clinical Trials with Patient Input

The summit also featured discussions on clinical trials and the role of PPI in refining study design. Linda Page, a heart patient, shared her initial experience participating in a clinical trial’s preference study component. “I didn’t realize my voice mattered,” she admitted, recalling how the survey felt like “just another checkbox” in the lengthy clinical trial process. Reflecting on this, Linda emphasized that if the survey’s importance had been clearly communicated, she would have approached it differently and taken it more intently. “Understanding the context would have changed how I thought about it,” she said.

This sentiment was echoed by multiple panelists who underscored the need for transparency in clinical settings. When patients know their input can drive tangible changes in research and device development, they feel more engaged and valued. MDIC is advocating for more patient-centered language and processes in preference studies, helping researchers convey that surveys are essential research tools, not just procedural steps.

Making Surveys and Tools More Patient-Friendly

Survey design emerged as a key topic, with patients expressing concerns over clarity, length, and accessibility. Anita Williams, an MS advocate and study contributor, highlighted the importance of patient involvement early in the survey design phase. “I call it ‘scientific speak’—sometimes the questions are just not accessible,” Anita noted. She also pointed out that patients are often expected to complete surveys far longer than the time stated, adding, “It’s extremely important for patients to be involved from the start to go through those studies and flag issues, like when a survey is taking much longer than promised.”

Similarly, Lisa Eskridge, a research coordinator, shared her experiences from the site level. In her work, she observed firsthand the challenges patients face with lengthy, complex surveys. She explained, “We had to talk to patients about why their feedback mattered and encourage them to volunteer their time for a tool that took over 30 minutes, not the 20 we had anticipated.” This discrepancy emphasized the need for researchers to align with patient expectations, ensuring tools are both efficient and relevant.

By integrating patient viewpoints into the design process early on, patient preference surveys become more valuable and beneficial for developers. Small adjustments, such as adding clear instructions or implementing breaks, make surveys more patient-friendly and improve data quality by reducing survey fatigue.

Highlighting Diversity in Patient Preferences and Supporting Shared Decision-Making

Patient preference research underscores the diverse ways in which patients approach healthcare decisions—insights that traditional clinical trials often miss. Panelists at the summit shared examples of how individual values and life circumstances shape patients’ choices, particularly in balancing risks and benefits. In one scoliosis study, families choosing between spinal fusion and non-fusion treatments considered factors like appearance, mobility, and predictability differently. For some, preserving spinal motion was more important than avoiding additional surgeries, while others prioritized stability and predictability.

This range of preferences shows the potential of PPI to guide medical device design and regulatory decisions, ensuring that products reflect real patient needs. MDIC champions this inclusive approach, emphasizing that capturing diverse voices—across cultures, ages, and health backgrounds—leads to more meaningful healthcare solutions.

Beyond design, PPI also shapes tools that empower patients in their treatment choices. Shared decision-making tools, informed by PPI, integrate clinical data with insights on quality of life, risk tolerance, and desired outcomes, facilitating collaborative treatment planning between patients and healthcare providers. For many participants, this shift from clinician-directed care to patient-centered conversations represents a new era in healthcare.

Building a Patient-Centered Future with MDIC

PPI shifts the focus of healthcare to what truly matters to patients, encompassing not just clinical outcomes but the full spectrum of individual priorities and quality of life. This approach drives the creation of healthcare solutions that resonate deeply with those they are meant to serve. By championing PPI, MDIC looks to a future where patient voices guide every stage of innovation, shaping a healthcare system that is as compassionate as it is effective.

To explore these discussions in more detail and hear from patients and industry leaders, watch the full session recording.