I’m sorry, but your grandmother has stage 4 leukemia. Her prognosis is a few months… at best. We’ll help you prepare in the meantime and we’ll make sure your grandmother is as comfortable as possible.
I remember everything about that day. There was fear, but there was also something else-- hope. At 11 years old, I genuinely believed I could find some treatment that could save my beloved “Ah Ma.”
At that age, I was wrong. Without high school biology, I could not understand any of the treatments that might have helped my grandmother. After six months of fighting against leukemia, my grandmother passed away. I was torn apart for I had lost the woman who had practically raised me, but I also realized that she would have wanted me to celebrate her life. My grandmother made me promise that after her passing I would do all I could to understand the disease that took her away.
Six years later, I have a few tools under my belt. I’ve devoted much of my time to understanding cancer and spreading that knowledge to others through an organization called Project Amare
. I truly believe that for patients and their families, learning more about their disease provides hope and can even have positive implications on outcomes.
Let me explain a little about what Project Amare is: Amare is a startup non-profit founded by ten Stanford students that connects research-oriented students to patients who need help navigating the complex field of medical treatment. We work directly with patients and their families by conducting research on the biology behind a disease, the biology behind different treatments, the results of treatments, and by providing emotional support.
And we’re starting to get recognized for our work, too. So far, Project Amare been featured by the SF Chronicle
, Business Times
, and KPIX-CBS
, we maintain our own website and are developing multiple apps and softwares to help patients from their mobile phones. I plan to further develop this organization to create an organization that spans colleges all over the US. On one hand, this allows students to apply their knowledge; on the other, it helps patients. Imagine that!
So why is patient education important? First off, many people do not have access to the greatest healthcare. By educating patients and their support systems about the kinds of treatments that are available to them, we’re helping put the power of choice back in their hands at a time where they often feel their most powerless.
Additionally, a typical doctor sees over 2,000 patients every year. They’re human. They get overwhelmed with work just like the rest of us. It is difficult to admit, but doctors make mistakes, which is why an educated patient is crucial to good healthcare. An educated, proactive patient
and family can bring treatments to the doctor’s attention and can scrutinize the doctor’s decisions.
I’ll share with you an example…
A few months ago, I met a mother who our organization was working with. Her daughter had been diagnosed with neuroblastoma, a cancer of the brain. After a two hour conversation, one thing in particular that she said stood out to me:
“My daughter was nearly killed about 14 times by doctors at UCSF and Stanford. Some of the time, we knew the treatment was risky. But other times, it was mismatched prescriptions, the wrong kind of chemo-- mistakes that shouldn’t have happened. I had to take an active role in her healthcare, learning as much as I could about brain cancer in the span of a few weeks.”
I am certainly not a healthcare skeptic. I believe in the goodness of nearly all doctors and healthcare providers, so don't take this story as an assault on doctors or healthcare. I'm telling it to show that patient education helps patients and their families by giving them confidence in their treatment choices and working together with doctors to stop mistakes before they occur.
For this mother, researching and learning all she could about neuroblastoma helped her ensure her daughter had the best possible shot possible at living. Now she’s using her experience with neuroblastoma
to help other families who have cancer diagnoses. That’s the benefit of prioritizing patient education.
This is a part of a series of blog posts, focusing on my observations and ideas for reforming health care, and what my organization can offer. If you would like any help researching a disease or some kind of treatment or if you just need someone to talk to, please email me at firstname.lastname@example.org
Photo courtesy of Liz Hafalia, The Chronicle.