Q&A on Patient Engagement With Dr Emil Chiauzzi of PatientsLikeMe

Emil Chiauzzi, PhD, research director, client services at PatientsLikeMe, sat down for an interview at the ISPOR 20th Annual International Meeting to discuss using social media for patient engagement and improving the relationships between researchers and patients.

AJMC: What sort of patient engagement have you seen through Twitter? Can it be utilized more when engaging patients in research?

EC: If you’re talking about patient engagement and getting people to come onto the site, we do use Twitter as one of the sources, but it really needs to be a multi-level social media strategy. So we tend to work with a lot of the major social media sources.

AJMC: In general, how would you use social media to engage patients? And what successes have you seen?

EC: We are using social media to help recruit people into our community. So we build communities. We’re building a lung cancer community, a PTSD community, a traumatic brain injury community—we work with advocacy groups and we work with social media sites, Google Ads, a lot of these traditional online sources, to bring people into the site.

We find that people are looking for a way to learn more about their disease, track their disease, and participate with other people. So we try to focus on our value as a research platform, because the people that tend to be interested in our site are more tuned in on research. They also tend to have chronic diseases that need a lot of daily management, so we try to use recruitment sources that appeal to those people.

AJMC: How would you like to see established relationships between researchers and participants improve?

EC: I think that researchers need to make less assumptions about what patients are able to do. Patients are able to generate ideas, help design studies, look at the data in their own way, and disseminate the information. So researchers need to give patients more credit for being able to do those things.

One of the things that I say to people is that, “We’re all amateur researchers. We’re all looking for ways on a day-to-day basis to test things out.” And researchers need to acknowledge that kind of curiosity. They also need to not see patients as excessively fragile in terms of their participation, because of their disorders. Patients are able to step back and act as citizen-scientists.