Patients and care partners shared unique perspectives and committed to forming an advisory board to shape and share the OurBrainBank mission.
True to our mission, driven by a commitment to incorporate and raise the patient voice at each stage - planning, execution, and evaluation - the OurBrainBank patient advisory board joined for its inaugural meeting on Friday May 11, 2018. Adam Hayden, GBM patient and OurBainBank board member, led the call with founder and chair, Jessica Morris, and patient advisory board members in attendance. The patient advisors include both patients and care partners, with each advisor contributing their unique experiences and intimate familiarity with glioblastoma.
Adam encouraged participants to introduce themselves and to speak to their backgrounds, telling stories of how each person came to know GBM - either through their own diagnosis, or the diagnosis of the person for whom they care. While the aim of this story telling was to feel comfortable with each other and get on a first name basis, the power of the language and authentic, impromptu style exhibited the shared values and support of people impacted by brain tumors: we are connected by devastating circumstances, yet forged in these fires, we share capacity to form fast friendships.
Participants emphasized gaps between clinicians and patients when it comes to breaking the bad news of this devastating diagnosis. Surgery is often performed before the diagnosis is confirmed, as was the case with one of our advisory board members who said of the harrowing three week waiting game, "I was discouraged from researching further." Another member recalled a clinician mentioning that their scan images did not look good, yet refusing to speculate further. Uncertainty and fear of the unknown permeates the patient experience.
We, "depend on others with the disease to learn about treatment information, then share that experience with others," described one of our patient advisors, "OurBrainBank allows us to connect and share."
Another significant challenge for people with GBM is the statistical ambiguity of the prognoses accompanying our diagnosis. The median survival point for GBM is somewhere between 15-18 months following diagnosis, but little instruction is given for where an individual actually falls within this non-specific range. What's more, little is known about "what's working for our long term survivors," remarked one of our advisors.
"Someone's in the statistical long tail,, why can't it be you?" asks a board participant. This rhetorical question captured the aim of OurBrainBank, to analyze the patient experience from all stages of diagnosis and survivorship, and to employ those learnings in improving outcomes for patients.
The OurBrainBank patient advisory board will meet monthly to review executive board strategy, disseminate information to the brain tumor community, recruit GBM patients and care partners to our movement, and glean insights from others' experiences, identifying best practices from survivors navigating the difficult disease landscape.
GBM patients or their care partners with interest in joining the OurBainBank patient advisory board are invited to email Adam <adam@ourbrainbank.com>. We would be grateful if participants would join monthly calls and shape future communications, outreach, and strategy in our movement to turn GBM from terminal to treatable, powered by patients.
Advocacy chair and GBM patient Adam Hayden using technology to connect with patients and caregivers from his home in Indianapolis, Indiana.
OurBrainBank in the News
Brain Cancer Patients Make Connections
Cancer Today, the American Association for Cancer Research’s (AACR) flagship magazine, interviewed our founder, Jessica Morris, and board member, Adam Hayden, for a recent article highlighting OurBrainBank as an exciting new grassroots movement for people with glioblastoma. The article featured the utility of the OurBrainBank App as a key tool for patients to manage and monitor their disease while contributing to research. We thank AACR and Cancer Today for their thoughtful coverage of our organization. You are invited to read the article, and readers are welcome to share the article with friends and others across your social media channels. Don’t forget to tag OurBrainBank on Facebook or @OurBrainBank on Twitter!
Dame Tessa Jowell’s Death and a Call for Research, an Op-Ed by Jessica Morris
Many are mourning the death of Dame Tessa Jowell, leading British politician, at the unrelenting hand of GBM. OurBrainBank founder Jessica Morris penned an op-ed for The Guardian calling on researchers to take their cue from Tessa Jowell’s aspirational politics to motivate their own research and to accelerate progress for treating glioblastoma. Jessica invites researchers to join in efforts to turn GBM from considered terminal to treatable by unlocking the power of patients. Our team is proud of the important contribution Jessica is making to the international dialogue to advance the conversation around GBM research, and we are grateful to our patients, donors, sponsors, supporters, and clinicians who promote OurBrainBank.
