Effective Research for Sensitive Patient Populations

By Stephanie Jones, and Debbie Llewelyn
Woman looking outside the window

In any kind of consumer research, the key to getting the best possible results is to design the research around the subjects’ particular needs and perspectives. This is especially true of medical consumer research, which often deals with sensitive patient populations.

Sensitive patient populations have unique vulnerabilities and sensitivities that can result in lower participation rates and hesitance to engage with researchers . These are individuals with conditions that are difficult to talk about even with their loved ones – and even more so with a stranger.

In some cases, the sensitivity may be from a condition that carries social stigma, like obesity, hepatitis C, HIV or mental health. Terminal conditions like aggressive or advanced cancers can be highly sensitive, as well as conditions in which symptoms are often discredited, like sickle cell disease or fibromyalgia.

Research programs that fail to accommodate patient sensitivities risk leaving out the perspectives of those most acutely affected.

While there is no one approach that applies to all sensitive populations, HawkPartners consultants design research programs that are intentional, flexible, thoughtful and empathetic. Our approach ensures patients feel recognized, validated and free from shame, while gathering reliable real-world insights to inform our clients’ strategic decisions.​

From screening and recruiting to execution, here are a few best practices we consider when designing research centered on sensitive populations.

Intentional Research Design

Intentional research design starts with a deep understanding of the sensitive population’s specific needs, concerns and cultural backgrounds. Consider what circumstances may prevent them from participating, and find ways to bridge those gaps.

Factors like the patients’ level of independence, mobility and cognitive impairment may affect their ability to fully engage. Strategies to accommodate these limitations may include involving caretakers or interpreters, offering virtual interviews, or conducting interviews in patients’ homes.

For instance, many adult sickle cell disease patients require a caretaker in the advanced stages of the disease, so we offer participants the option of having their caretaker present for the interview. This also presents the opportunity to gain insight into the caretaker’s perspective.

Research with sensitive populations also tends to have a higher-than-normal rate of cancellations and no-shows. The difficult nature of the topic may lead participants to back out at the last minute, or they may lack the resources and stability to participate. We often see this with populations experiencing drug use, mental illness or housing insecurity. In research involving these groups, it may be helpful to recruit more participants than you need, schedule floaters to fill in for last-minute cancellations, or help respondents to find a location with computers where they can complete an online survey. If homework or pre-work is involved, be flexible on when it’s submitted and have an alternate plan if they are unable to complete it before the interview.

All of these approaches affect timeline and budget, so it’s important to factor them into the initial research design. By anticipating the challenges participants will face, and planning accommodations up front, you can meet your research objectives while avoiding unexpected costs and delays for the client.

Empathetic Approach

We often partner with an empathetic recruiting partner that has expertise working with a particular patient population. They bring a deep understanding of the patient experience that can help inform how we initially approach potential participants and build trust from the first interaction.

Individuals in sensitive populations often express reluctance to participate in research and require extra reassurance and care to overcome their apprehension. Be prepared to listen and offer adjustments to address their concerns.

Some conditions may carry a stigma or stereotype of which patients are wary. For instance, in research involving high-risk hepatitis C patients, we may purposely use an unusually clinical tone in screening questions as well as the interview in order to remove any impression of judgment.

For conditions like sickle cell disease or fibromyalgia in which symptoms are often discredited, it’s important not to rush the patient through the interview. They may have been met with dismissive reactions in the past, so we make a point to give them as much time as they need to share their experience and feel truly heard.

Flexible Research Methods

Sensitive patient populations are likely to experience health issues and other challenges that make it difficult for even the most willing subjects to follow through. When conducting research centered on these groups, it’s helpful to build in extra time and other accommodations for their unique circumstances.

In one case, we worked with a patient who kept missing interview appointments due to unexpected hospitalizations. But he was highly motivated to participate, and we were willing to reschedule as many times as he needed, so we were ultimately able to capture his perspective.

These discussions are likely to be emotionally charged, and even physically taxing, so it may also help to allow time for breaks or schedule multiple shorter sessions to avoid causing the patient undue pain or stress.

For patients with sensory impairment, be prepared to have questions and/or stimuli read aloud to them or made available in a larger font.

Thoughtful Execution

In the research execution phase, consider any logistical or emotional challenges participants may face as a result of their condition.

For instance, one project involved concept testing for a direct-to-consumer commercial aiming to increase emotional connection to the product. Because the target audience’s condition often has cognitive impacts, we chose not to use a clutter reel even though it is a common tool for this type of research. We didn’t want patients to feel like we were testing their memory, knowing that any frustration or embarrassment could skew the emotional results we were actually testing for.

Other thoughtful adjustments for sensitive patient populations may include using even more simple and straightforward stimuli than usual, and offering the option to participate with or without cameras. When the respondents’ literacy levels are uncertain, we often suggest conducting interviews with verbal questions and responses instead of a written survey.

How HawkPartners Can Help

When conducting research with sensitive patient populations, it’s vital to understand the challenges and emotional impacts of their condition(s). This knowledge allows us to design the recruiting, screening and execution of the research in ways that build trust and remove barriers in order to gain the most accurate insights possible.

Contact Stephanie or Debbie to discuss research and strategy for sensitive patient populations.