My guest for this episode of Harlow On Healthcare is Brian Loew, CEO of Inspire (@TeamInspire). Brian created Inspire in 2005 with the goal of accelerating clinical trial recruitment through the use of safe trusted online social networks organized by medical condition for patients and their caregivers. In his words, “Our goal at Inspire is to accelerate medical progress through a world of connected patients.” This world is broken down into thousands of rare (and not so rare) disease communities; about one-third of the groups are cancer-related, one-quarter are focused on rare diseases. There are also subgroups, many of which have been defined by patients (e.g. segmenting cancer groups by stage, infertility groups by couples trying to get pregnant and those trying to stay pregnant), and many of which include caregivers as well as patients. Constituencies also include medical professionals, researchers and national patient advocacy associations. As Brian said, “Our goal, ultimately, is to facilitate medical progress by enabling researchers around the world while we do some research ourselves. Our real goal is to make it possible for thousands of researchers outside of Inspire to do great work more quickly.”
The community dialogue, and the research, needs to be built on trust, and Inspire’s website has a control panel that enables community members to set levels of access to their own information within the community, and change those levels over time; all researcher access is based on explicit permissions, opting in to particular studies.
One interesting example of the research enabled by the data in the Inspire communities is a published study, which leveraged discussions on Inspire to identify the fact that adverse effects of a certain drug were known in the online community seven months before they were first reported to the FDA. See: JAMA Oncology and JMIR Public Health & Surveillance.
While it won’t necessarily replace randomized clinical trials anytime soon, descriptive research based on the patient perspective is critical. As Brian noted, “the FDA was interested in the lived experiences of patients and caregivers … and in treating that as a source that is as valid as scientific or medical or physician[-sourced] information.” He called the “early warning” found in this study an example of a “profoundly useful early warning” derived from an analysis of a billion and a half words written by Inspire members.
Inspire has been the source of other sorts of research efforts over the years. For example, it was the platform that allowed for the identification of patients with an extremely rare condition, who were located all over the world (SCAD). The patients brought the study participants to the researchers. Another example is the use of NLP anlaysis of comments allowing a researcher to discern a previously undocumented correlation between a drug and a symptom. Another involves a similar review of content to establish a connection between certain childhood events and a certain cancer. These research efforts are all powered by the large volume of comments, from a large number of support group participants, on the Inspire platform, and they allow researchers to focus their efforts on genomic research or other research in a way that would be impossible without the support group content and the connections among patients across geographies.
Brian concluded by saying, “I would hope that all of us — as patients and caregivers — are treated with respect and our data are available to us without restriction and we are fully recognized as valuable contributors to medical progress. That is a positive vision of the future and I hope we get there sooner rather than later.”
I spoke with Brian as part of my ongoing series of fireside chats with healthcare innovation leaders – Harlow on Healthcare, on HealthcareNOW Radio. Listen to our radio station online, or ask your smart speaker (Amazon Echo or Google Home): “Find Tune In station HealthcareNOW Radio.” You can catch me live weekdays at 8:30 am, 4:30 pm and 12:30 am ET. As each new show goes live, the last one joins the archive, available via SoundCloud or your favorite podcast app (iTunes, Stitcher, iHeartRadio). Your comments are welcome here. Join the conversation on Twitter at #HarlowOnHC.
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