6 Ways to Prioritize the Patient Voice in Patient Journey Research

Published August 29th, 2022 | 3 Minute Read

By Courtney Robertson
VP, Insights
Health Union

Within the pharma industry, patient journey mapping tends to begin with a focus on an identified commercial opportunity. Multiple data sources are then integrated to map the patient journey and pinpoint needs that align with the identified opportunity. However, when patient journeys rely heavily on HCP feedback or big data sources as the backbone, patient-reported experience gets undervalued—and potential opportunities are missed. 

Instead, patient journeys should always start with the patient. Then, HCP and caregiver feedback—perhaps paired with other data sources—can be put into the right context and can more effectively round out insights or fill gaps. For example, a recent patient journey map we created for an oncology product started at client request with HCP feedback who interpreted patient mindsets as mostly positive and hopeful. This map only became complete when unmet needs and other critical patient perspectives were layered in.

The millions of patients living with chronic and complex conditions who engage with Health Union’s communities provide unique immersion into the patient experience—and they can help identify new questions, needs, opportunities, and priorities for assets early in research and development (R&D) through to early and late commercialization.

There are many ways to approach patient journey research. There is no “one size fits all” way to dig deep into the different inflection points, twists, and turns along this journey. There are, however, essential guideposts to follow that will ensure patient voices are elevated and brought to the forefront so you can build an accurate and durable patient journey to support decision making:

1. Don’t start at the beginning.

Many teams have historical patient research that can be built upon to help identify research questions, hypotheses, and gaps. This research should be audited and discussed before developing a journey from scratch. Even more importantly, work with a partner who is already immersed in the patient type’s experience who can bring both qualitative and quantitative understanding of the disease context to the table, including insights on patient social behaviors and online activity.

2. Define the journey you’re interested in.

Are you looking to map the entire patient journey from pre-diagnosis through multiple lines of therapy/switching? Or are you looking to double-click into a specific aspect of the patient journey to understand the milestones and moments that matter when a patient switches from Treatment A to Treatment B? Ensure your research partner understands the treatment dynamics and landscape in a way that can help you decide how to focus the research for optimal results.

3. Talk to patients at different points in time.

There are both cross-sectional and longitudinal aspects to conducting a patient journey. Work with a partner who can easily access patients who are at different points in their journey—whether it be emotionally or clinically—and efficiently capture real-time experiences and reactions that accompany the day-to-day condition experience. Health Union strongly recommends multiple phases of research to capture both “in-the-moment” multimedia-based feedback as well as reflections on past experiences to truly understand the experience.