It is very easy to dive deep into a market research project and lose sight of the fact that you are delving into someone’s life, their private space, and for some if not most, a sensitive topic. Here are 6 lessons that I have learnt over the years of conducting patient market research.
Lesson #1: You must draw the line somewhere in the sand
In all my years of conducting market research, and many of them in Oncology, I never accepted a mandate that entailed interviewing metastatic cancer patients. I never felt there was a grey area here. It was, and continues to be, quite black and white for me. There is no appropriate question to ask someone whose disease has been staged as terminal. Moreover, unbeknownst to many market research agencies, many cancer patients participate in market research for advocacy reasons. They think you are representing a pharma company that has a cure for their tumour type and they want in. What happens when you don’t?
Lesson #2: Patient privacy is YOUR #1 Responsibility
Sounds like a platitude…. right? I can’t tell you how many times I have shown up at a central venue, walked out of the elevator, and was greeted by a big poster stating “Hepatitis B Study-- Waiting area # 2”. It doesn’t take much to figure out that participants in Waiting area # 2 are not there for the <Shampoo study>. I never share the topic of the study with the facility if it is sensitive. Patients are told to simply mention my agency when the receptionist greets them.
Lesson # 3: Patients should know what to expect
Not all patients are seasoned participants in central venue interviews. If the study is a focus group, patients should be clearly told beforehand there will be other participants in the room. Some people are willing to share their story with a moderator, but, less so with a group of strangers.
Lesson # 4: Respect Patient Wishes
I have conducted patient research whereas I was asked to turn off the camera or draw the blind between the viewing and the interviewing room. Patients do not want to feel compromised or at risk of having their disease/sickness known to others. Moreover, as a moderator, if there is a chance that you may know the patient, have an associate conduct the interview. Imagine how a patient would feel walking into a room only to be interviewed by a moderator who lives 2 blocks away from them.
Lesson # 5: Sometimes you must go off script…
A few years back I tested packaging with patient suffering from a neurological condition that affected their dexterity. One of the many parts of the interview was to pass a blister pill pack to the patient and request they expel 2 pills. In meeting with the FDA’s regulations of childproofing all dispensed medications, the blister pack’s cardboard and aluminum lining was so thick that I without any dexterity issues, could hardly expel 2 pills. I could see the patient’s frustration increase as the interview went on. Most attributed their inability to complete the task with the worsening of their disease. I went off script regardless of how others would view it and comforted the patients by sharing with them my inability to complete the task. You could see the immediate relief in their faces. I also let them know that thanks to their participation in the market research, the packaging would most probably be improved to better suit their patient cohort.
Lesson #6: Verify and then Verify Again
Checking a physician’s credentials is quite easy---patient credentials are another story. Years ago, I was recruiting for a patient study and my first 3 recruits were all fraud and friends of one another!! The more questions I asked the more intense the lies. Lies beget lies and by the time I was done screening the patient she was so ensnarled in her own lies that it was obvious to both of us that she was solely interested in the honoraria being offered. I had to disqualify the gang of 3 liars.
A two-prong system takes care of the latter. Thanks to the widespread use of smart phones, my recruiters always request a photo of the prescription itself. Moreover, patients are asked to bring their prescription to the interview. Lastly, patients are told a second screening may occur by a senior supervisor prior to the market research. While not fool proof, the latter does scare away those with bad intentions.