moderating patient research with empathy

I have spent decades conducting qualitative research on behalf of pharmaceutical / healthcare clients, much of it with patients. It is tremendously gratifying on both a personal and a professional level. And sometimes it’s heartbreaking.

Qualitative research allows us to connect with respondents, to develop a relationship during the time we spend together – whether it’s a 30-minute session, 90-minute or 4 hour session. This relationship is helpful in eliciting each respondent’s truth to the degree possible. We employ various tools – from projection techniques, collage creation and patient written essays, to role playing and discourse analysis. All are acknowledged as effective means by which to dig deeper, to go beyond the stated and / or self-constructed alibis and rationale to respondents’ deeply held desires, fears and hopes.

Moderators working in this arena are generally expected to remain clinical throughout the discussion session, to be friendly but to keep an emotional distance, driven by concerns that to show empathy introduces bias. And there are academic studies that support this view. There is of course, an opposite school of thought, and one I have embraced.

We ask patients to describe what can be mentally, physically and emotionally painful journeys, to explain the impact a disease has on their own and their loved one’s lives. During these deeply personal discussions patients have varyingly expressed shame, guilt and / or remorse, have wept over an uncertain (or certain) future, and fear. We ask them to tell us all of this with the intention of helping our clients bring therapeutic products and services to market. I believe we owe these participants, our fellow human beings, an environment that is supportive, understanding and kind.  Physically reaching out a hand to a respondent when they’ve struggled to express a loss, or when they are describing what it means to have become a “pariah” within their personal community because they have an infectious and life threatening disease, is a natural response. Expressly telling a respondent I am sorry for their pain or they have no reason to feel shame, is a natural response. Verbally expressing concern or sadness is a natural response.

Empathy is not a “trained” qualitative technique or tool. But it has proven highly effective at allowing respondents to discard their filters and expose what they cannot or have not been able to share with their personal or professional communities. Does it introduce bias? Research says, no more than any other technique, or even the moderator themself.

As the pharmaceutical / healthcare industry continues its path to more patient-centric practices, it becomes increasingly important to allow natural empathy to play a role in qualitative work with patients.