Bridging the Gap: Tailoring Research for Hard-to-Engage Patient Populations
To capture high-quality insights from niche patient groups, researchers must account for physical abilities, stigma, and life context. By employing person-first language and adaptable formats like asynchronous boards or camera-optional interviews, pharma professionals can respect lived experiences while gathering the deep, actionable data necessary to advance modern therapeutic strategies.
Published February 24, 2026 | 4 Minute Read
By Katie MacTurk
Vice President, Insights
Health Union
In the world of pharmaceutical market research, the “easy” insights have mostly been gathered.. As therapies become more specific and marketing strategies more targeted, we are constantly searching for smaller, increasingly diverse, and harder-to-reach patient populations.
At the recent PMRC East conference, I had the pleasure of sitting down with a director of insights at a leading pharma company and a Patient Advocate to discuss how we can “wring maximum insights” from fewer respondents while remaining deeply respectful of their lived experiences.
Here is how we can strategically design research to meet the unique needs of these essential voices.
Start with Humility, Not Just Demographics
To truly engage hard-to-reach populations, we must look beyond basic clinical and demographic attributes. It starts with humility: accepting that our existing knowledge may be incomplete or outdated. When we consider the “whole person,” we can better predict potential barriers to participation or authentic engagement.
When planning research, we must account for a host of factors that shape a patient’s reality:
- Physical and Cognitive Ability: Does someone experience fatigue or memory issues that may impact the ability to focus on long tasks or recall physician conversations?
- Stigma and Mistrust: How might stigma associated with past behaviors – or mistrust of the medical establishment – interfere with open sharing?
- Life Context and Access: What kind of technology access or savviness does a person possess? Do they have a predictable enough day-to-day to be able to schedule an interview for 2 weeks away and have a stable, private space to participate?
For example, take a potential respondent in their 80s living with extensive stage small cell lung cancer. Some of these demographic and clinical characteristics can give us clues as to particular items we should consider in research design. Are there sensitivities around smoking history that might make them hesitant to open up? Are they able to navigate and log in to a tech platform that enables screen sharing and a back-room chat? Will “chemo brain” and cyclical side effects impact the ability to focus during a 60-minute interview?
Now with advances in AI, we as researchers have another powerful tool to think through potential implications. However, does the internet filtered through an AI tool portray all the potential nuances of patient lived experiences? As our patient advocate panelist noted, researchers can also “listen to the voices of real patients” through blogs and forums to get up to speed on a new condition area and hear a multitude of perspectives rather than relying solely on aggregated AI data.
Strategic Design: Flexibility as a Mandate
One size does not fit all. If we want high-quality, actionable insights, we must offer the flexibility that enables someone to participate openly. This might mean:
- Interviews: Allowing respondents to stay off-camera if they value anonymity or are feeling physically unwell
- Surveys: Keeping length manageable (15-20 minutes or less) and including “don’t know” options to ensure the participant feels like a “good, smart respondent
- Discussion Boards: These can be a powerful “middle ground” for populations without stable schedules or quiet spaces. For example, in a study with respondents who were unhoused or lacked stable living situations, asynchronous boards allowed for deep probing without the stress of a fixed appointment or screen-sharing requirements
Wording as an Act of Empathy
Well-crafted questions are unspoken acts of empathy. We must prioritize person-first language—for example, asking if someone is a “person living with migraine” rather than a “migraine sufferer”.
Even the way we ask about complex medical terms matters. Instead of asking if a doctor “ever told” them about a treatment—which might make a patient feel uneducated—reframe it: “When I’ve talked to doctors, they’ve used a specific term… I’m not sure if this is language they use with their patients. Did your doctor ever mention…?”16. This shifts the burden of communication away from the respondent, who may want to be perceived as well educated about their condition to a more neutral framing.
The Path Forward for Pharma Professionals
The deepest understanding doesn’t come from a “kitchen sink” approach. It comes from building and pressure-testing a knowledge framework over time through multiple, smaller, focused studies.
By prioritizing empathy in design and flexibility in execution, we respect the lived experiences of the respondent and also just get better data–a win-win for everyone.
Learn more about Health Union Insights: health-union.com/insights-offerings.
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