Editor’s note: Clare Murphy is the qualitative director at KJT Group. This is an edited version of an article that originally appeared under the title “Unleashing the Potential of Online Patient Communities.” 

Symbiotic: Denoting a mutually beneficial relationship between different people or groups.  

When you think about market research, a symbiotic relationship is not likely top of mind. Rather, you probably imagine a one-way street where the respondent provides information and the researcher culls insights. But what if this didn’t have to be the case?

A symbiotic relationship between patients and researchers is often what is achieved through online patient communities as they provide a safe space for patients to share their experiences and make connections while simultaneously cultivating ongoing insights. This means that you will gain a deeper understanding of the true patient experience without the one-way street relationship. This relationship allows us, as researchers, to see “behind the veil” and get closer to understanding the true impact of a condition on patients’ lives.

While online patient communities can be formed for any patient base, they are particularly beneficial in the rare disease space. In a recent Vital Voices vodcast, Amy Allen, Solutions Consulting vice president at KJT Group, interviewed Jill Pollander, vice president of patient services at the National Organization for Rare Disorders (NORD) who shared details on the importance of community for rare disease patients:

“When somebody receives a rare diagnosis, it’s really not uncommon to feel alone, isolated and a bit lost and in coming together, in finding other rare individuals, it really helps these patients to find a community, a home and a support. We say at NORD: alone we are rare, together we are strong.”

And while the benefit of an online community is substantial for patients, it also has special ben...