From Activism to Advocacy: Building Empathetic Technology in Clinical Trials, Backed by Data

This blog post was authored by Karen Wood, Director, Patient Insights Programs at Medidata.

Every day, I wake up knowing the software we build could mean the difference between months and years before a breakthrough treatment reaches patients. Working in the clinical trial technology industry has taught me the profound difference between activism and advocacy; and understanding this distinction is crucial for creating technology that truly serves patients.

The stakes are real: the challenges participants and researchers face are often quantified and highlight systemic barriers.

“Statistically, 80% of clinical trials struggle with enrollment challenges. Furthermore, the burden placed on participants contributes to significant attrition, as up to 30% of patients drop out of studies.”

Behind each statistic is a human being—someone whose treatment options may be delayed or limited because our systems and processes created barriers instead of bridges.

The Critical Difference

Activism often focuses on fighting systems, demanding change through pressure and confrontation. While activism has driven important healthcare reforms, advocacy takes a different approach. Advocacy is about working within systems to create sustainable change, building bridges rather than burning them down.

In our work, the most effective patient advocacy happens when we collaborate with, not against, the existing healthcare ecosystem. Researchers, site coordinators, and pharmaceutical companies all share the same ultimate goal: getting safe, effective treatments to patients who need them.

Technology Is a Bridge, Not a Barrier

Too often, clinical trial technology has been built with patient experience as an afterthought. We have historically created systems that prioritize efficient data collection for researchers while inadvertently creating additional burden for the people whose lives depend on these trials.

True patient advocacy in technology means flipping this script; it means designing with the understanding that every additional form, extra appointment, and confusing interface creates barriers for people who are already navigating complex medical situations.

“Before asking how a new feature streamlines data collection, we must first ask how it affects the patient's daily life.”

Find a Place for Empathy in Every Code Line

Building empathetic technology requires us to see beyond user personas and data points to recognize the human stories behind every interaction. The 67-year-old cancer patient struggling with a tablet interface isn’t just a “low digital literacy user”—they’re someone fighting for their life who shouldn’t have to also fight with technology.

This empathy shows up in practical, measurable ways, resulting in the reduction of patient burden:

• Digital Accessibility: We design mobile-first platforms that work on older devices because not everyone has the latest smartphone. We focus on creating intuitive interfaces that don’t require training because patients shouldn’t need to learn new systems while managing their health. Companies are now tracking digital accessibility as a key metric.
• Supporting Caregivers: We recognize that many patients rely on family members for support, so our platforms accommodate multiple user roles and provide clear information that caregivers can understand and act upon.
• Respecting Time: We eliminate redundant data entry, reduce unnecessary travel to sites, and create flexible scheduling systems that work around patients’ lives, not against them.

The Domino Effect: How Patient-centric Technology Helps Everyone

When we truly advocate for patients through thoughtful technology design, everyone benefits. This patient-centric approach acts as a catalyst for greater empathy across the entire clinical research ecosystem.

Quantifiable benefits are evident across the trial structure:

• Clinical trial sites experience fewer no-shows because patients can easily manage their schedules and receive helpful reminders.
• Data quality improves because patients better understand what’s being asked of them and why it matters.
• Recruitment becomes more efficient because word-of-mouth spreads when participants have positive experiences.

Measuring What Matters

Traditional clinical trial metrics focus heavily on efficiency, tracking things like:

• enrollment speed
• data quality
• cost per patient

While these factors are important, advocacy-driven technology companies must shift their focus. We need to measure patient success metrics, including:

• patient satisfaction
• digital accessibility
• long-term engagement

We must actively track whether our technology is genuinely reducing burden or merely relocating it. This focus requires collaboration, involving patients in the design process and creating feedback loops to solve real problems. It also requires internal advocacy, pushing back when stakeholders introduce features that complicate the patient experience.

What is the Path Forward?

“Every feature we build, every interface we design, every integration we create is an opportunity to advocate for better patient outcomes. This isn’t just about making clinical trials more efficient; it’s about making them more human.”

The future of clinical trials lies in recognizing that the most efficient technology is the kind patients actually want to use. When we build with genuine empathy, the key question is moving from “How can we make our processes more efficient?” to “How can we make this person’s journey easier today?”

That’s the difference between building tools and building bridges. That is the heart of advocacy over activism, ensuring technology serves the humans at the center of clinical trials.

Learn how we’re partnering with advocates to build better technology through our Patient Experience.