Founder, Patient True Talk
Before writing this guest blog for NCCS, I read some other blog posts to get a feel for what would be interesting to this audience. The December 20, 2018, post entitled “Remembering Jennifer Friar Groves” really moved me. I’m naturally drawn to stories of perseverance, of people who give way more of themselves than they rightfully should, especially during times of severe adversity. We can learn so much from these individuals about how to be a better person and help others. Reading Shelley’s tribute inspired me to try harder and make a bigger difference.
So with that, I’d like to share with you a new way to pay it forward and directly help the newly diagnosed.
Think back to that moment when you were told you have cancer. The doctor informs you of your treatment options and discusses whether surgery, radiation, chemotherapy, a clinical trial, or some combination thereof is the best path forward. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?
When I was first diagnosed with melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.
Today, there are various online communities that offer support. Like a live support group, but you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice. I do believe these resources are extremely valuable. If you’re like me, however, you may want to cut to the chase and find someone who experienced exactly what you are facing, and then reach out for a private conversation to share information and have questions answered.
My name is Dan Engel and I founded Patient True Talk to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.
When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc. Basically, everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.
Launched last year, Patient True Talk is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.
I believe that there are many survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and who would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors and their cancer experience. Patient True Talk fills that void. To be effective, however, the site needs thousands of survivors who battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.
I’m so pleased that NCCS agreed to collaborate with Patient True Talk to expand its advocacy reach to impact individual patients. My call to action is this: if you are or know a survivor, please register or encourage others to register on PatientTrueTalk.com.
P.S. During my two years fighting Stage 4 melanoma, I formed and launched the Miracle League of San Diego, a non-profit organization that provides children with special needs the opportunity to play baseball in an organized league. If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.
About the Author
Dan Engel was diagnosed with stage 4 melanoma in November 1998. He founded Patient True Talk in 2016 to solve one of the pressing issues patients and their caregivers face in the cancer world — a means to connect to other patients, especially when considering and deliberating over treatment options.
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