That philosophy starts early. Robinson notes that engagement has the greatest impact when it’s built into decisions from the beginning, rather than added on later. When patients are involved at that stage, their experiences become part of the decision-making fabric, rather than an afterthought.

She sees this as a way of aligning what benefits patients with what supports long-term business goals.

For Janer, the bridge between empathy and evidence is built through clarity. “We’re always looking for that bridge,” she says. “How can we make sure that what matters to patients is understood in a way that also makes sense to leadership teams? It’s about finding common meaning between people and performance.”

It begins with qualitative research. In one-on-one interviews, patients describe what it feels like to live with a condition, to navigate a clinical trial, to balance treatment with the rest of life. Each of those experiences is transcribed, then “coded” – a process that involves identifying recurring words, phrases, and sentiments across dozens of accounts. Over time, patterns emerge. “Once you start seeing the same barriers or emotions appear again and again, those individual voices form a collective one,” Janer explains. “They become data points in their own right.”

This process turns lived experience into a form of evidence that resonates across boardrooms. For decision-makers accustomed to metrics and charts, it allows the human texture of healthcare to be seen through a familiar lens. “We can show that, when a certain percentage of patients cite transportation as a barrier, that connects directly to why recruitment targets aren’t being met,” Janer says.

It’s the moment when human experience translates into evidence that decision-makers can act upon. She describes this as the point where empathy meets evidence – the space between emotion and measurement where meaningful understanding begins.

For industry partners, that means building the right environment for open collaboration. Patients, advocates, and clinicians all bring different kinds of expertise to the table, and making space for each of those voices to be recognised requires careful consideration. Robinson describes sessions where patient advocates sit alongside key opinion leaders, each encouraged to contribute equally. “Sometimes a patient will naturally be quieter in a room with a famous expert,” she says. “Our role is to create space for their voice – to make sure no one dominates the conversation.”

Authenticity often depends on preparation. Participants are carefully briefed to ensure they understand both the purpose and the scope of the discussion, while facilitators guide the room to maintain balance. In some cases, advocates act as intermediaries, helping to bridge the gap between lived experience and professional expertise. “Having advocacy groups at the table helps build authenticity,” Janer notes. “It shows patients that their perspectives are represented by people who understand their world.”

Her approach focuses on building confidence as much as building consensus – particularly when it comes to engaging compliance and leadership teams early in the process. Each conversation strengthens credibility, turning engagement into an ongoing exchange, rather than a transactional exercise. Over time, she explains, those small acts of trust accumulate into something larger: a shared understanding that makes partnership possible.

At a surface level, there are obvious indicators, such as higher participation and retention rates, more diverse recruitment, and better satisfaction scores. Yet, Janer believes the real insight lies in connecting those outcomes back to the experiences that shaped them. “When we see improvements in recruitment or retention, it’s because we’ve removed a barrier that patients were telling us about,” she says. “Those changes show that listening has led to action.”

The key, she explains, is alignment. Before any project begins, teams establish what success should look like – not just in numbers, but in experience. By comparing baseline data with post-engagement results, it becomes possible to see how perception translates into performance. “If patients tell us that transportation is a barrier, and we then see under-representation from those regions, that’s a direct correlation,” Janer says. “Fix the access issue, and the data will reflect it.”

Mapping disease prevalence against trial locations often reveals vast areas where patients have little access to participation. By understanding who isn’t being reached and why, Janer says, engagement can be designed to be truly inclusive.

For Robinson, success lies not in the quantity of data collected, but in the quality of understanding it produces. “Patients should see how their input made a difference,” she says. “It’s a two-way commitment – a relationship built on respect, not reporting.”