6 Ways to Prioritize the Patient Voice in Patient Journey Research
Updated August 12, 2025 | 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.
The millions of patients living with chronic and complex conditions who engage with Health Union’s communities give us a unique opportunity to immerse ourselves in the authentic, day-to-day realities of the patient experience—and our patient access and insights 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. Start with an information audit.
Many teams have historical patient research that can be built upon to help identify research questions, hypotheses, and gaps. This research should be compiled and discussed before developing a journey from scratch. Are there findings that can be leveraged from prior research to inform the skeleton or early outlines of a patient journey? Are there specific hypotheses we should seek to confirm (or disprove)? What impact will evolving (or anticipated) market dynamics have on the patient journey today – and in the future? Research partners should be brought in early to these conversations, but it’s also important to work with a consultancy who is already immersed in the patient experience and who can bring a deep intuitive understanding of the disease context to the table.
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.
4. Understand the broader context.
In mobile ethnography research that we conducted for a chronic condition, a young father provided a video as he pushed his son in a swing, reporting that his symptoms were relatively quiet and he was having a good day. However, he did not mention that he was sitting down as he pushed his son – an impact of his condition that would have been invisible if we had not asked for video submissions as part of the ethnography. An appropriate research partner should be able to identify opportunities not just based on an explicitly mentioned need, but by understanding the broader context of what is happening in a patient’s world.
More recently, advances in AI and health technology may also be an important backdrop from which to understand the patient experience (e.g., Are patients using AI-generated summaries as part of their information-seeking? Are HCPs using AI tools to facilitate review of results or recommendations? How will this change patient-HCP conversations and decision-making?). In addition, depending on the condition, new prescription fulfillment channels and patient service program offerings might need to be considered (e.g., the role of telehealth, compounding pharmacies, and manufacturers ‘direct-to-consumer digital health platforms). Ensuring that these dynamics are accounted for within the research’s lines of questioning will enable the full ecosystem to be understood.
5. Bring it to life.
Ensure the patient journey is memorable and enduring by leveraging multimedia reporting (audio and video) where and when appropriate. To effectively incorporate the voice of the patient, stakeholders need to hear the voice of the patient. Health Union often recommends a working session with the entire team to review the patient journey, with immersive exercises so that the team can develop an intuitive and empathic understanding of a patient’s lived experience.
6. Make it useful.
Identify leverage points based on areas of unmet need or opportunity that best align with product/brand strategy and benefits. Then, contextualize this with foundational insights from social scraping or other data sources.
Health Union Insights’ Patient Journey uses our proprietary patient attitudinal database, access to patient conversations within our 40+ condition-specific online health communities, and our flexible multi-modal research methodology to ensure well-rounded, rich, and action-oriented patient journey insights. We build on our foundation of existing disease-specific data and patient access to design custom research that will best capture and communicate the patient journey. Through Health Union’s one-of-a-kind Social Health Network, we also have the opportunity to tap patient leaders who can share their experience layered on to the experiences of everyday patients.
If you are looking to develop, refresh, or fill gaps in a new or existing patient journey, trust that Health Union knows how to put any aspect of the journey into the proper patient perspective. We invite you to contact us today.
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