6 Ways to Prioritize the Patient Voice in Patient Journey Research

Published July 29th, 2024 | 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.

Related Articles

A Patient's Story Amplified: Data, emotion, and the role pharma can play

A Patient’s Story Amplified: Data, emotion, and the role pharma can play

This livestream webinar helps pharma understand how integrating patient-reported data creates meaningful engagement at all points in the patient journey.

BBK Health Union partnership

HCPs Important Factor for Clinical Trial Participation

Healthcare professionals can be influential in a patient’s clinical trial participation, but the impact is more nuanced and multifaceted.

The Online Health Community Model: Role and Importance in Marketing Research

Recognizing the growing role of patients and caregivers in healthcare decisions, pharmaceutical and biotechnology companies are looking for ways to easily and accurately infuse the voice of the patient and caregiver into strategic marketing decisions. The need to do so quickly, efficiently and accurately, particularly with hard-to-reach patients, creates a need for online patient communities. However, the approaches and philosophies behind these communities can vary greatly.

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 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. 

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.

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’ 4D 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.

Related Articles

Rheumatoid Arthritis In America

Seronegative RA and Its Impact on Quality of Life

Survey data shows seronegative RA patients are more likely than those with seropositive rheumatoid arthritis to have been misdiagnosed.

A woman is anxious about her IBS diagnosis.

Diagnosis of IBS Is on the Rise, With Little Relief

Since 2017, annual “IBS In America” survey statistics have shown an increased rate of formal IBS diagnosis from a healthcare professional year over year.

Psoriatic Arthritis Patients Discuss Financial Assistance With Doctor

Data suggest an important opportunity to facilitate communication about patient support programs and financial assistance options for psoriatic arthritis.