P13: Are you Really Listening? Find New and Innovative Ways to Capture the Patient Voice and Translate into Insights
Poster Presenter
Samuel Poryanda
Consultant
ConvergeHEALTH By Deloitte United States
Objectives
Capture insights along the clinical trial patient journey to optimize engagement and trial satisfaction, optimize study design with the patient voice in mind
Method
Our Deloitte Center for Health Solutions interviewed 27 executives from life sciences companies (primarily biopharma and a few medtech) and patient advocacy/disease research organizations. In addition, we also conducted market research and focus groups including 34 investigators and 17 patients.
Results
While there are numerous definitions of what it means to be patient centric, we are certain what it is not. Patient centricity is not a public relations or externally focused initiative. It is not just being better engaged with patients as study subjects. And lastly, it is not a one size fits all. In our work towards striving to become more patient centric in clinical trials and the life sciences industry, we have identified several innovative strategies to capture the patient voice. The first step in the journey is to engage patients early and often. We’ve found in conducting surveys to understand the patient preference has significantly influenced our protocol design. For example, in one study where investigators assumed the patient preference was to be absolutely ‘pain free.’ However, when surveying the patient’s, we found that they had expected a more realistic outcome as only reduction in pain. This conscious survey methodology should be applied at the conclusion of a clinical trial, did the trial address the patients’ identified outcome? And most importantly, did we communicate the trial results in a transparent and patient friendly manner? Building off the work with our focus groups, we found that soliciting consistent feedback through direct data capture enabled study participants to feel more empowered in their treatment decisions and ultimately lead to a better care experience. It is important to note that with the explosion of the digital era, technology is meant to supplement the patient experience and there is no direct substitute for having an active dialogue with patients. Through this dialogue, we are capturing the true patient voice and fostering the connection to better understand the patient journey.
Conclusion
Patient-centricity should be an early guide of the study design process–do you know the key motivators of your patients to enroll and remain in a clinical trial? The feedback from our focus groups, market research, and social listening have allowed us to understand the factors that will take the disease state and target patient population into account when designing a trial. Patient engagement is a journey that requires thoughtful feedback loops and integration strategies to help triangulate on key patient issues across the entirety of their experience. This approach must be unified beyond just the patient and consider the feedback from investigator and global study teams. Facilitating communication between these groups can empower patients to have more control and be more connected to their condition. Lastly, with expanding opportunities to gather information from a variety of patient data sources and electronic health systems, the quality of the data is paramount. We thoughtfully prioritize the data collection process with the patient voice in mind and use real time data to aid in treatment decisions and eliminate unnecessary data collection that adds to the patient burden. Our aim is to bring the patient perspective and improve trial participation through balancing scientific endpoints with patients' personal goals. If life sciences organizations can apply the strategies we found in our research to bring patient centricity to the forefront, there will likely be greater opportunity to, build trust, improve connectivity with patients and most importantly, improve their health and wellbeing.
