Connecting Our Brain Bank
One of the learnings from the current pandemic is how rapidly and easily people with all ranges of technical ability and experience have embraced online video meetings. Once expensive and limited to big corporates, during the crisis it’s connected new users to bring families together, religious congregations, and of course patients.
The US-based patient group with a global reach, OurBrainBank, represents patients with the aggressive brain cancer, glioblastoma. As a small group, they’ve embraced technology very smartly to punch above their weight.
Posting online meetings
At the end of March, the group posted on its Facebook page and YouTube Channel an internal online global video meeting about drafting a Bill of Rights for glioblastoma patients. We see a lot of patient group meetings online, and often the result when just passively viewing is quite routine and procedural. By contrast, the OurBrainBank meeting, although nearly an hour long, is gripping, and quite emotional.
Jessica Morris, the patient who founded OurBrainBank, is a charismatic, passionate, straight-talking host and meeting leader. She doesn’t sugarcoat. She’s direct. And she’s funny. She sets the tone for lively contributions from patients across the world. Archiving and posting the meeting with little or no editing, gives an opportunity for wider participation and commenting.
Every Tuesday at 5pm UK time, the group runs a weekly video meeting to bring patients together. The time is chosen to balance end-of-day contributions from the UK and start-of-day ones from US patients. The tagline for the meetings gets to the heart of what patient groups are about: “Please join us to tell your story and learn from others.”
For example, a recent meeting included a patient story focused on an expert patient with a background in biomedical science talking about the science of GBM (Glioblastoma Multiforme). At a time when so many cancer patients are, on balance of risk, excluded from clinical settings, bringing scattered communities together becomes even more important. OurBrainBank makes it easy to join by ‘inducting’ new participants with a ‘how to Zoom’ link.
As the name suggests, one of the key activities of the OurBrainBank patient group is a free app to help patients track their symptoms, share data with clinicians, donate data for medical research into GMB and aid clinical trial recruitment.
Finally, a simple key learning from the OurBrainBank group. Create and post bite-sized video tutorials on key app functions. Most commercial health app developers don’t do this, and equally neither do most patient groups who create and commission apps. OurBrainBank shows that this needn’t cost much or take a lot of time to do, but this can be extremely helpful. For example, their latest tutorial on their YouTube channel is on the core function of how to share data. If only more developers would spend just a little time showing how to use their apps.
We should leave the last word to the group’s founder:
“We’re going to turn glioblastoma around. We’re going to move it from being considered terminal to treatable. And we’re going to do that powered by the people who matter most. And that’s us – the patients.” – Jessica Morris, patient and founder OurBrainBank, speaking at the UK launch.