Editor's note: Bj Kirschner is director at Just Worldwide, a U.K.-based research firm.
Many years ago, I was doing a study with stage IV cancer patients in central location. A patient pulled me aside after her interview and said, word-for-word, “I have been told by my doctor that I may have a year left to live. In this interview they showed me four ads for my cancer drug and all we talked about for the first 30 minutes were the colors. Why do I care what color the ads are? I may not be around when the ad ends up in magazines and I’m already taking it anyway.”
You don’t forget a quote like that and it really forces you to reconsider an approach to qualitative health care research with patients. Not just patients, “difficult patients.”
Each time a new audience is sought in the world of qualitative health care market research, the audience gets the label of “difficult.” There used to be “easy” physicians, such as cardiologists and primary care physicians, and “difficult” physicians, such as surgeons and oncologists. Hospital purchasing managers? No way! Now they are all routine.
The same thing is happening with patients. I say “happening” because there are still a bevy of thorny issues facing us when it comes to patient research. But, just as with HCPs, each time we do the unthinkable, we find the confidence, and tools, to tackle someone even more “difficult.”
Discussions of how to recruit difficult patients are common but less investigated is what happens after the patients are recruited. How do we design and implement research studies aimed at harnessing the bounty of information from such small and unique populations while maintaining their comfort and accessibility? Since qualitative research is about personal stories and not box-checking, my aim here is to use such stories to launch this discussion. I have picked just a few topics for consideration, some of the more high-level consi...