A new patient-centered call to action
Glioblastoma is a debilitating brain cancer with few treatment options. Patients deserve access to quality care and the agency to make informed decisions.
OurBrainBank, along with patients and fellow advocates, developed a GBM Bill of Rights: a set of concepts — some practical, some aspirational — to call for improving the standard of care and quality of life for GBM patients.
We want to know what are the biggest needs and priorities. Please tell us about your experiences. Patients and carers anywhere in the world are invited to respond.
We, the patients, have the right to...
Patient-centered care — an equal and collaborative patient/doctor relationship with personalized treatment that includes genomic and genetic testing, and tumor analysis.
Yes, I have all of this.
No, I don't have any of this.
I have some of this.
A second opinion — offered at appropriate stages of diagnosis and treatments.
Yes, my doctor suggested I get a second opinion.
No, my doctor didn't suggest I get a second opinion.
My doctor didn't suggest it, but I got a second opinion.
Clarity of information — up-to-date, accurate information about all potential treatment options; transparency about treatment centers and their outcomes.
Yes, I was given up-to-date comprehensive treatment information.
No, I wasn't given up-to-date comprehensive treatment information.
I don't know or I didn't know to ask.
Specialist care — access to a coordinated medical team — brain tumor specialist, neuro-surgeon, neuro-oncologist, radiation oncologist, and others.
Yes, I have a great, coordinated team.
No, I don't have a coordinated team.
Access to trials and experimental treatments — up-to-date, accurate information about new drugs, treatments, and clinical trials — including international options.
Yes, my doctor told me about multiple options.
No, I was only offered the standard of care.
Got some or little information and did my own research.
Psychological support — comprehensive psychological help for me and my carer.
Yes, my doctor suggested it and it was available.
No, my doctor didn't suggest it and we didn't get any.
My doctor didn't suggest it, but we sought it out on our own.
Money-blind treatment — best treatment regardless of personal financial situation.
Yes, my insurance (or national healthcare program) covers me.
No, my insurance/program only covers the minimum.
No, I'm not covered and have financial difficulty.
Fast-tracked treatments — quick MRI results and ER visits.
Yes, I get this from my provider.
No, I don't get this from my provider.
Mixed experiences — some are quick, some are not.
Patient-owned records — I own and can easily access my health records.
Yes, I can easily access my health records.
No, I can't easily access my health records.
I haven't tried or I'm not sure about accessing my health records.
Patient-owned data — I can choose to donate my health data for research.
Yes, I was informed about donating my heath data for research.
No, I wasn't informed about donating my health data for research.
I haven't tried or I'm not sure about donating my data for research.
Information about the best end-of-life care — access to pain management, palliative care, and hospice.
Yes, my medical team talked to me and my family about best end-of-life care.
No, my medical team hasn't talked to me and my family about best end-of-life care.
Mixed experience — my medical team has told me and my family a little about this.
Information about no-cost brain donation.
Yes, my medical team told me or my family about brain donation.
No, my medical team didn't tell me or my family about brain donation.
My doctors didn't tell me about brain donation, but I did my own research.
Please share your experiences — good and bad — as they pertain to one or more of these "rights." Example: "I'm lucky enough to get my MRI results right away" or "I have to wait two weeks for my MRI results." (Answers will be public, add your name and location if you like.)
Do you feel attitudes towards health and healthcare have changed because of the Covid-19 pandemic? (Answers will be public, add your name and location if you like.)
Anything else you would like to add for Glioblastoma Awareness Day July 22, 2020? This will be a day to learn, honor, act, and give in support of people affected by GBM. (Answers will be public, include your name and location if you like.)
We thank the many patients, carers, and fellow advocacy groups who helped us develop the GBM Bill of Rights. We hope that one day soon, GBM will be considered a chronic-but-treatable disease, rather than a terminal one. To see all responses, please click "See previous responses" on the acknowledgment screen, after submitting.
To learn more about:
Glioblastoma Awareness Day 2020: National Brain Tumor Society
OurBrainBank: Donate your data for GBM research
Count Me In: The Brain Cancer Project: Donate your data for GBM research:
The Brain Donor Project: Donate your brain for GBM research
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