Conducting Effective Qualitative Market Research with Medical Patients

By Dave Kreimer, Principal of Next Step Consulting
This article was published in QRCA Views Magazine, December 2007

When I first entered the field of market research (17 years ago), I worked almost exclusively for pharmaceutical firms and spoke only to physicians. My work with physicians continues. However, an increasingly large percentage of the projects conducted by my firm, Next Step Consulting, now explore the perceptions of patients suffering from various diseases. I believe that several factors influence this trend, including the advent of new medications, more direct-to-consumer (DTC) advertising and the increasing level of patient involvement in the treatment decision process.

Some recently conducted studies with patients include:
  • Medical device development such as injection systems, inhalers and other products
  • Informational materials testing related to marketing (including print or video communications) or devices (such as package inserts with instructions for use)
  • Direct-to-consumer (DTC) advertising (print and television), with various combinations of exploratory research (understanding the attitudes and needs of a specific patient population), followed by message and concept testing
While conducting these projects, I have discovered that working effectively with patients requires some special awareness, skills and logistical considerations that are different from those required with physicians or ordinary consumers. The rest of this article highlights some of the things I have learned in each of these areas.

IMPORTANT AWARENESSES - UNDERSTANDING THE PATIENTS POINT OF VIEW

Getting participants to genuinely disclose their physical and emotional experiences is probably the greatest market research challenge. This is especially true when dealing with patients that have serious medical conditions. Think about it – how willing would you be to share details about your physical limitations and the grief you feel about the impact of a disease on your life with a stranger who is sitting in front of a full-length mirror that hides another roomful of strangers? Clearly, this is a much more risky endeavor than talking about your feelings regarding some consumer product or customer service.

Additionally, this natural reluctance to share is sometimes compounded by equally understandable high levels of denial and limited awareness regarding the impact of their disease or their treatment options. It is not uncommon to hear the response, “I never thought about that,” to a specific probe focused on what you would assume to be an obvious consequence of their condition. For example, to help my clients to understand the bottom line concerns of their “customers”, I sometimes ask patients to describe their greatest fear about the future. In one case, a young woman with a recent diagnosis and a dramatic onset of MS was unable to answer, burst into tears and wanted to terminate the interview. However, after some respectful silence and gentle questioning (more about this later), she chose to stay and confided that she is not emotionally ready to consider or to discuss the potential long term implications, especially those related to her career and her prospects for raising a family. A similar dynamic exists with the patients that tell you that they just trust their physician to do what is best and don’t pursue any information on their own.

Finally, I think that it is important to understand why patients participate in market research studies. I believe that most make the sometimes significant effort to get to a facility and complete a group or interview because they want to help others with the same condition. By far the most common parting phrase I hear is, “I hope I was helpful.” As well, it is important to note that some patients attend market research in the hopes of learning something new or with the unrealistic expectation of finding the cure for their condition. The desperation that occasionally accompanies this type of quest can sometimes distract the patient from your true objectives.

When you consider these factors, you begin to understand the key differences between discussing something as real and personal as the life-changing impact of a disease with patients, as opposed to reviewing current medical trends with generally knowledgeable and well-spoken physicians or gauging consumers' reactions to a new product. Keeping these dynamics in mind will likely increase your effectiveness in terms of meeting your objectives.

HELPFUL SKILLS – WAYS TO BUILD TRUST AND DEEPEN THE CONVERSATION

The suggestions that follow all promote the overall goal of making patients feel comfortable and safe enough to disclose their true feelings.

Clarify the research objectives
It is important to do this for all types of studies. However, since most patients attend market research studies in order to help others with the same condition I make an effort to frame their participation as a contribution that will aid their peers. Even when the research objective is not a great service to their fellow patients, such as testing a commercial, I will tell participants that they are helping a company with a treatment for their condition to communicate more effectively with other patients that may benefit. I also make an extra effort to express my gratitude and appreciation for their feedback at both the beginning and end of each interview or group.

Also, for those expecting to learn something new or seeking the cure for their condition, I believe that it is important to clarify the research goals early in the discussion, so that they are not unduly disappointed or distracted.

Establish that you care by being genuine and accepting
There is a motto in the corporate training world (where I learned many of my moderating skills), that says “People don’t care how much you know until they know how much you care.” For moderators doing research with medical patients I would alter the phrase to read “Patients don’t choose to share until they know that you care.”

In my experience, caring is communicated through the subtleties of tone of voice, respectful silences, small body gestures and token actions that are potentially risky, but that increase a feeling of personal connection and intimacy. For example, shaking hands with RA patients in an especially gentle manner, acknowledging the special effort it takes wheelchair bound patients to attend a group or complimenting some aspect of the appearance of a psoriasis patient that is clearly hiding their condition. Please understand that I am not suggesting these particular actions as techniques to make you appear to be caring. I am just recalling some of the opportunities that I took advantage of in a natural kind of way that I noticed were appreciated by my participants. I believe that if you truly care and follow your naturally kind instincts that the patients you work with will sense it and you won’t need any tricks or techniques.

Break the ice and then systematically advance to riskier topics and issues
It is very important to gradually work up to the most sensitive aspects of an interview or group. For example, you would not ask a patient about their greatest fear about the future as an introductory question. I feel fortunate that almost all of the patient work I do begins with a medical history. This introductory segment provides me with opportunities to gradually escalate the degree of personal disclosure by sensitively probing for more details. Each time a patient takes a risk and shares something more personal I acknowledge it and express my appreciation. If done well, I eventually establish enough trust to probe further as I advance to the riskier topics which most concern my clients.

Work through the intensely sad moments
It probably has not happened that often, but what do you do when a participant gets very sad and emotional? Culturally, when tears are involved, our first response is to try to stop the emotion (and ease our own discomfort) by passing the person a tissue or making an apologetic comment. However, your willingness to respectfully sit with a patient that is experiencing deep sadness, and then pursue the issue when they are ready to talk again may yield big rewards. To return them to a conversational space you may also need to help them move past any shame or embarrassment about “losing control”. Almost all of the dozen or so emotional moments that I have witnessed have resolved in a manner that brought deeper understanding regarding the intensity of the patient’s experience. These interactions also left me feeling closer to the person and more fulfilled about the work that I do.

Observe and learn from peer interactions
Some of my best findings have resulted from observing the interactions between small groups of patients. This is especially true when I am trying to identify common experiences. For example, in one study I learned a lot from listening to veteran MS patients advise their more newly diagnosed peers regarding concerns about maintaining their primary relationship. During a Bulletin Board study, patients comments regarding their greatest challenges clearly denoted those that were most common. I have also noticed that psoriasis patients were more forthcoming about the impact of their conditions in the presence of other patients in a small group setting than when speaking just to me during an in-depth interview.

It definitely seems easier for many patients to share their experiences with those in similar circumstances than with “outsiders”. I have used this dynamic to my advantage by asking groups to coach me as if I were a newly diagnosed patient. For example, I have asked - what do I need to know about the current treatments that are available to new psoriasis patients? In this manner I received a very helpful view of their perceptions about the existing options.

LOGISTICAL CONSIDERATIONS
Conducting market research with patients also presents logistical challenges. It is very important to consider the special needs of the patient population with whom you will be speaking. During one of my first projects with rheumatoid arthritis (RA) patients, a participant chastised me for not providing a comfortable enough chair. He explained that RA patients often find sitting and twisting to be difficult and, therefore, require a padded chair that swivels. I now carefully consider in what ways I can make the research experience more comfortable for my patients. For a study with multiple sclerosis (MS) patients, I carefully selected facilities with easy access for wheelchairs and I printed the research handouts in extra-large type, since vision impairment is a common challenge for people suffering from this malady. By proactively providing simple accommodations, the logistics of the study run more smoothly. As well, patients sometimes notice your thoughtfulness, feel appreciated and, as a result, are more forthcoming and cooperative.

Here are a few other tips to increase your effectiveness while conducting market research with patients:

Be patient with patients
You may be 15 minutes behind schedule, but you must still provide the patients with the time they need to walk down the hallway, get comfortable in their chair, complete a task or consider a response. The quickest way to alienate a participant is to appear intolerant of their condition.

Know when to cut your losses
This may seem diametrically opposed to the previous tip. However, sometimes it is very obvious that a patient is not going to make a useful contribution. Discovering that a patient is not qualified for the study is the most common reason that I “pay and send” a participant after beginning an interview. Despite careful screening, I sometimes discover that they don’t have the necessary severity of the illness or the proper drug experience. Also, occasionally, severely limited physical or communicative abilities make a patient unable to either complete a task or to provide useful feedback. In this situation, I often have a floater (another patient who is waiting in case an interview slot becomes available) who can take the dismissed person's place or I use the time to debrief with the team.

Use the best methodologies
Most of my studies follow the industry standard of 30-40 personal, in-depth interviews conducted in a few different markets. However, as mentioned, I have found that the camaraderie of a small group sometimes helps patients to open up. As well, telephone interviews or groups can provide a less risky way of talking to people than those conducted personally. As well, they are a great way to reach a national sampling of patients with rare conditions (such as ankylosing spondylitis). Bulletin Boards are also anonymous and can bring together greater numbers of patients with rare conditions. It is not uncommon for me to use some combination of methodologies for a single study or for different phases of a project.

In conclusion, the tips discussed in this article should help to ensure that your future market research projects with medical patients run more smoothly and accomplish their objectives. On a personal note, I have found working with patients to be uniquely rewarding. Because the people with whom I speak are usually experiencing significant lifestyle limitations and may live with uncomfortable levels of physical and or emotional pain, they often have a very clear sense of what is truly important to them. Many convey through their comments and presence a sense of grace and perspective about their lives which helps me to be more accepting of my own (comparatively petty) tribulations and to feel extremely grateful for my good health.

To date, Next Step Consulting has worked with patients experiencing rheumatoid arthritis, psoriatic arthritis, psoriasis, ankylosing spondylitis, multiple sclerosis, prostate cancer, asthma and Crohn’s disease.

© Next Step Consulting