The VoP Imperative: Treating Patients as Valued Stakeholders During the Drug Development Process

As patient engagement has grown in healthcare, it’s also growing in the world of clinical trials. Rather than programs with outreach elements, comprehensive solutions that engage and treat patients as equal partners in clinical trials serve the twin goals of supporting patients and optimizing outcomes. Capturing the Voice of the Patient (VoP)—through consistent engagement with patients, and unifying methods of data capture and reporting—are key to Research & Development (R&D) success.

In tapping into the patient engagement opportunity, the pharmaceutical industry can learn a lot from its healthcare counterparts. Suppose Karen, a 55-year-old woman, has experienced numbness and swelling in her hands for the past month. Simple tasks, like folding laundry and sending emails, are becoming increasingly challenging. She suspects her symptoms may signal arthritis, but wants some initial answers before determining whether it’s time to see a doctor. After searching online, she stumbles upon HealthUnlocked, a website that dubs itself “the social network for health,” prompting users with an empowering call to “join the health movement.” When Karen searches for “arthritis” on the website’s intuitive, consumer-grade interface, she’s instantly plugged in to communities and message boards that provide insight into her potential condition from fellow patients. In the case of rare diseases, these platforms have proven to be an even more vital tool, giving patients the power to engage within communities that had previously been invisible. It’s this engagement vehicle that has elevated the authenticity of the relationship between patients and the individuals with whom they interact throughout the care journey.

In clinical trials, patient engagement takes multiple shapes, with the end goal of providing patients with the needed information and motivation throughout the trial to encourage retention and compliance. These factors are critical to the success of any clinical trial. Patient drop-out hovers at around 30%, but with new tools, patients have more options for engagement to remain in a trial. Digital platforms, much like HealthUnlocked, can accelerate the effort to provide ongoing support and a way for patients’ voices to be heard. Allowing patients to share their perspectives—and empowering them with the information they need to know—is foundational to a collaborative partnership. Giving patients a voice and equal status as a valued stakeholder in the process is imperative to clinical trial success.

In addition, the psychological benefits of patient engagement play an equally, if not more, significant role in clinical trial success. When patients feel supported and valued, and know their voice matters, they are more likely to remain adherent and stay in the trial.

Recognizing this reality, North Highland has developed a comprehensive engagement solution called Rate My Trial (RMT). It is designed to collect real-time patient input pre, during, and post clinical trials. RMT provides a clear window into patients’ experiences and how their disease impacts their daily lives. The data simplifies methods of data capture and reporting, helps study sponsors achieve higher levels of compliance and retention, and informs thinking about future trial design. Treating patients as equal participants and ensuring their voices are heard is vital to R&D success, and more importantly, to pharma’s future.

In the next article of this series, we’ll explore how medical development teams can use social data to optimize trial design, uncover new opportunities, and reduce recruitment costs.

For additional perspective on this topic, please see our latest piece on clinical trial engagement.