Address the participant - not just the disease

Editor’s note: Mary S. Hurley is partner, Shen Research Organization, Cleveland Heights, Ohio.

Respondents in medical market research studies can be characterized in many ways, such as the type of condition/disease stage they face, length of time since initial diagnosis, speed of disease progression, physical limitations or demographic characteristics. In addition, participants in medical or pharmaceutical research almost never enter the market voluntarily. Unlike luxury-car buyers, fashionistas or even grocery shoppers, these respondents are rarely self-selecting. They are in the market because a medical professional has diagnosed a condition that would benefit from treatment. Participants’ reactions to this can range from gratitude that something is available to help them to resentment that they need this help or frustration about the current state of available treatment options. Any one or a combination of these variables can result in challenges to working with respondents in a given study. This article identifies key issues for qualitative researchers and suggests approaches for maximizing the value of the experience for both participants and clients.

Nature of the condition

One important consideration in working with respondents in medical market research is the nature of the condition they face. Obviously, the more life-threatening or debilitating the condition, the more emotional a respondent’s reactions to the condition and related issues may be. Cancer and end-stage kidney disease are but two examples of conditions that can lead to very emotional discussions and interviews. However, even respondents with seemingly less-threatening conditions may need to express their feelings. The following are a few suggestions for working with respondents facing these threats.

Plan time to address these issues. While respondents vary in how close their emotions are to the surface, qualitative researchers should anticipate that at least some participants will need time to express their fears, hopes and general feelings about their conditions, even if this is not an intended part of the research. Allocating time for respondents to express their feelings, if they choose to do so, early in the interview gives them an opportunity to move beyond their emotional reactions and be a more effective participant in the main part of the research. Extending the length of the interview/focus group or limiting the number of issues addressed in the discussion can make time for dealing with emotional issues. Having a plan for transitioning respondents from the exploration of feelings into the main part of the interview is also important. Failure to address this issue can lead to rushing through some parts of the discussion or falling seriously behind schedule.

Be prepared to show personal empathy. Respondents whose emotions are close to the surface may not be able to control them, even in a businesslike interview setting. These emotions can surface at any point in a discussion, even if they have already been addressed earlier. Expressing empathy provides an opportunity to create a bond with the respondent that often leads them to be more cooperative as the interview progresses. It also eases feelings of embarrassment over having lost control among respondents who value personal control.

Consider the human aspect when choosing a qualitative methodology. Respondents who share a particular condition often bond with each other very quickly in a group setting. This can be of great value to the research process but it can also be difficult to control. The need or desire to share experiences can overwhelm the group and make it difficult to keep a discussion on track. It can also be emotionally exhausting for the researcher to lead several very intense discussions among emotionally-vulnerable people in a short time period. Allowing additional time for each discussion, using more structured exercises to keep the group moving and having smaller groups are ways to work around these issues. Longer breaks between sessions can also help researchers recover their emotional energy for the next discussion. If the goals of the research do not require a group, one-on-one depth interviews may be a better choice for working with people who face more threatening conditions.

Additional interviewing challenges

Newly-diagnosed participants and those who have recently learned their disease is progressing can present additional interviewing challenges. In addition to the possibility that they are more emotionally vulnerable than participants who have been in a stable disease state for some time, they may also be less knowledgeable or more confused about their condition/stage of disease and the options available to them. Here are a few tips for dealing with newly-diagnosed or newly-informed participants.

If possible, elicit information about diagnosis and progression during the screening process. Directly explore these issues at the beginning of the discussion. Obtaining information about these issues during the screening process is very helpful. However, even if this information is captured during screening, it is still possible that a respondent has suffered a setback or received other adverse news about their condition since being recruited. The opportunity to explain their current diagnosis and, if need be, express their feelings about it can provide important information for the research, as well as help the respondent be more productive during the main part of the discussion. Again, it is important for the researcher to express empathy when appropriate and transition effectively to the main part of the interview.

In focus groups, consider placing recently-diagnosed respondents in a separate discussion. This will allow for better exploration of these patients’ issues and a clearer understanding of how those issues impact the subject of the research. Recently-diagnosed patients sometimes agree to participate in research as a means of learning more about their condition. They may ask more questions than longer-term patients or show confusion about their condition, treatment options and prospects. This can slow the pace of discussion and make it harder to accomplish the goals of the research.

If low incidence rates or other constraints lead to the inclusion of recently-diagnosed patients, be prepared to work with them. If possible, check screening information to identify how many respondents have been recently diagnosed. Adjusting one-on-one interviews to accommodate these issues is relatively easy. In a focus group setting it may be useful to include specific questions to address the issues of the recently-diagnosed. This will give them an opportunity to discuss their experiences and feelings, hopefully leading them to more effective participation in the main part of the discussion.

Varying physical capacities

Research participants with some diseases/conditions are physically handicapped or have varying physical capacities depending on how they feel day-to-day. This latter group can be particularly difficult to identify because their handicap is not always visible and may not even be a result of the condition being researched. Nevertheless researchers need to be prepared to work with them as effectively as possible.

Be prepared to accommodate participants’ basic physical needs. This may include removing chairs from around the focus group table when some (or all) respondents use wheelchairs, having facility staff available to help participants get into and out of the focus group room, accommodating drivers/caregivers in the facility waiting area, being willing to valet-park respondents’ vehicles, offering help with coats and boots in inclement weather, calling cabs and making refreshments easily accessible in the waiting area and focus group room. Making these accommodations is easier when the number of people who will need them is known at the outset, based on screening information. However, some of these needs may arise on an ad hoc basis.

Be prepared for varying respondent energy levels. Patients in more severe disease stages, or those simply having “a bad day,” may have difficulty sustaining the focus and energy needed to be optimal research participants. This may lead to interviews or discussions that go slowly, lack the desired depth of response or simply need to be ended earlier than planned. If working in a disease category/disease stage that is very debilitating, plan the most efficient interview possible by limiting topics and questions to those most relevant to the research issues. Keep materials to be reviewed and exercises as simple as possible, while providing step-by-step directions. If working with an individual respondent who is having a bad day, be prepared with a prioritized list of issues/exercises that are critical to accomplishing the goals of the research and attempt to complete these, if they are within the respondent’s capacity.

When working with obviously ill respondents, be prepared to show empathy and appreciation for their efforts. Severely ill respondents often make major personal efforts to participate in research. Attending to their physical needs, making the interview as efficient and pleasant as possible, allowing enough time to avoid rushing (and creating stress) and acknowledging respondents’ contributions all help accomplish the goals of the research.

Diverse set of respondents

Recruiting criteria for medical market research studies typically focus on the presence/severity of a condition, current use of treatments/agents/devices, and often, health insurance coverage. Recruiting criteria often exclude characteristics that would be commonplace in other studies (such as education, income, employment status, etc.) because they are irrelevant to defining the target market and could make recruiting too difficult, especially for low-incidence conditions. This may result in a very diverse set of respondents, challenging the researcher to work with people of varying ages, education and income levels or English-language skills. Some suggestions for addressing these challenges include:

Ask recruiters to note observable characteristics or volunteered information, even if the issues are not on the screener. Carefully reviewing both the screener information and recruiter notes can help prepare the researcher for the range of respondents participating in a particular study. Respondents sometimes volunteer that they have difficulty walking, hearing or seeing, and it is possible to observe that someone has difficulty speaking English. Respondents may also volunteer that they are coming from a long distance, will be brought to the facility by a caregiver, or that they are due at work immediately after the discussion. Some respondents acknowledge they are forgetful when speaking to recruiters. Knowing these things in advance can help the researcher (and facility) be ready to meet the respondents’ needs and adjust the guide to maximize the value of each interview.

Keep study materials and exercises as simple as possible. Study materials should be reviewed by researchers before they are finalized. Use of medical jargon or technical terms that are unfamiliar to those outside of the medical profession should be avoided in materials developed for patients. If such terminology must be used, it should be clearly defined for the respondent. In an international study, translated materials may need to be reviewed to make sure they are easily understandable to native speakers of the language in which interviewing will be conducted. This should include a check of syntax, spelling and the appropriate use of idiomatic expressions. These efforts help avoid respondent confusion/distraction, save time during discussions and maximize what is learned from the research.

Be prepared to help respondents having difficulty. If respondents are struggling with written material it may be necessary to read it with them sentence by sentence. In a one-on-one setting it can be useful to sit on the same side of the table with a respondent (instead of sitting across from them) to read material or do written exercises. This makes it easier for the respondent to point out problems and also creates the sense of a shared task. As a result the respondent is less likely to feel inadequate, which can lead to unresponsiveness. In a focus group setting, it may be useful to ask respondents to work together on exercises, rather than having the moderator single out individuals for special assistance or attention.

Be prepared to adjust the tone of each interview. Many medical conditions affect large segments of the population, leading to respondents with a wide range of education levels, facility with the English language, occupations and ages. For example, diabetics can be attorneys or sales professionals as easily as they can be retired grandmothers and fast-food workers. Researchers may need to adjust the tone and style of their interviewing after meeting each respondent, to maximize what can be learned from the research. In a focus group setting, it may be useful to use ice-breaker exercises early in the session to make respondents feel more comfortable with each other and the group setting.

Extra time and care

Qualitative research with medical market research participants can be far more complex because of physical and emotional limitations, and preparation is the key to success. Disease knows no demographic limitations, and neither should the research regarding it. From recruitment to day-of activities, taking the extra time and care to accommodate respondents with conditions that affect their ability to participate can improve the research results. Acknowledging that medical market research participants don’t elect to qualify for such studies and meeting the participants’ physical and emotional needs can help make the interviews richer and more comfortable. So research the participants before the research begins, and don’t forget to empathize.