The anonymity of members in Ben’s Friends communities allows them to freely share their experiences, doubts and worries. They safely find comfort from fellow patients without revealing their identity.
Researchers, at the same time, can gain insights from our communities that could leapfrog the discovery of long-awaited treatments as well as making improvements to existing medications. The US Food and Drug Administration calls this “natural history”, which it now considers of immense value as shown in the draft guidelines for treatment research it released in 2019.
The research titled “Decision Making Among Patients with Unruptured Aneurysms: A Qualitative Analysis of Online Patient Forum Discussions” is one such study that benefited from one of our communities, particularly the Brain Aneurysm Support Community. This was published in World Neurosurgery and authored by Joshua Feler, Amy Tan, Amanda Samman, Charles Matouk, and David Hwang
The study is premised on the need for physicians to discuss with their patients the “risk of rupture versus procedural complication risk” when dealing with unruptured intracranial aneurysms (UIA).
To gain insights, researchers examined conversations among brain aneurysm patients on public online forums like Ben’s Friends. They were surprised at the difference between what the patients discuss with their doctors and what they discuss among themselves.
The researchers found out, among others, that patients are confronted by difficulties of decision making in relation to their aneurysm, prefer to receive treatment from high case volume providers who communicate well, and consider not only clinical but also psychological and social factors when coming up with management decisions.
Although additional research is necessary to further enhance communication with patients about treatment and rupture risks of UIA, this is a first step towards coming up with better communication practices by analyzing what the patients discuss with fellow patients in relation to their decision making practices.