• Facebook
  • Twitter
  • Youtube
  • Instagram
  • LinkedIn
  • Rss
  • Store
  • Donate
NCCS - National Coalition for Cancer Survivorship
  • About
    • Our Mission
    • Our History
    • The 1986 Club
    • Our Team
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2022 State of Cancer Survivorship Survey
    • 2021 State of Cancer Survivorship Survey
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Survivorship Champions
    • Subscribe to NCCS Updates
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State-Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Cancer Convos Podcast
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • Ellen L. Stovall Award
      • 2022 Winners
      • Awardees
      • Sponsors
      • Committees
    • Cancer Policy Roundtable (CPR)
      • Fall 2022 CPR
      • Spring 2022 CPR
      • Fall 2021 CPR
      • Spring 2021 CPR
      • Fall 2020 CPR
      • Spring 2020 CPR
    • Cancer Policy and Advocacy Team (CPAT) Virtual Symposium 2022
    • 2022 State of Survivorship Survey Results
    • Webinars
  • Contact Us
  • Search
  • Menu Menu
  • 0Shopping Cart

Your generous year-end donation will be matched $1 for $1    DONATE

NCCS Blog CPM Logo

Introducing PatientTrueTalk.com – A Way for Advocates to Directly Help the Newly Diagnosed

February 21, 2019/in Cancer News, Cancer Policy Blog Access to Care, Care Planning, Clinical Trials, Quality Cancer Care, Shared Decision-Making, Survivorship Care NCCS News /by actualize
Dan Engel

Dan Engel

By Dan Engel
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?

“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.”

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.

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

Tags: Advocacy, cancer care, Cancer Survivorship, caregivers, clinical trials, Guest Post, patient first, Patient Navigation, patient tools
Share this entry
  • Share on Facebook
  • Share on Twitter
  • Share on WhatsApp
  • Share on LinkedIn
https://canceradvocacy.org/wp-content/uploads/2018/10/NCCS-Blog-CPM-Logo.jpg 600 1200 actualize https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png actualize2019-02-21 15:04:352019-02-21 15:04:35Introducing PatientTrueTalk.com – A Way for Advocates to Directly Help the Newly Diagnosed

Latest News

NCCS Advocate Spotlight: Sharon Rivera Sanchez - Triple Negative Breast Cancer Survivor Finds Passion in Fitness and Advocacy

Sharon Rivera-Sanchez: Triple Negative Breast Cancer Survivor Finds Passion in Fitness and Advocacy

January 12, 2023
As a Triple Negative Breast Cancer survivor, Sharon turned her personal experience into a passion for advocacy and giving back to the community. When she received her diagnosis in May 2015, she remembers being in a state of shock and grief. She said, “You have to allow yourself time to breathe and grieve.”
Read more
https://canceradvocacy.org/wp-content/uploads/Advocate-Spotlight-Sharon-Rivera-Sanchez.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2023-01-12 15:24:442023-01-12 15:24:44Sharon Rivera-Sanchez: Triple Negative Breast Cancer Survivor Finds Passion in Fitness and Advocacy
Rep. Debbie Wasserman Schultz introduces Comprehensive Cancer Survivorship Act at December 14, 2022 press conference.

NCCS Celebrates Launch of Comprehensive Cancer Survivorship Act

December 14, 2022
Representative Debbie Wasserman Schultz (FL-23), a champion for cancer survivors and a survivor herself, held a press conference today…
Read more
https://canceradvocacy.org/wp-content/uploads/CCSA-Blog-Featured-Image-1200-×-600-px-1.png 600 1200 Kara Kenan https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png Kara Kenan2022-12-14 16:03:462022-12-14 16:03:46NCCS Celebrates Launch of Comprehensive Cancer Survivorship Act
Alique Topalian, PhD, MPH Advocate Spotlight

Alique Topalian: Childhood Cancer and the Frightening Realities of the Survivorship Journey

December 7, 2022
Alique was first diagnosed with Acute Myeloid Leukemia (AML) at the age of four. Her mother, Michele, knew something was wrong because “the light in her eyes was gone”. After being told by doctors that there was nothing wrong, her family was relentless until new blood work uncovered blast cells.
Read more
https://canceradvocacy.org/wp-content/uploads/Alique-Topalian-Advocate-Spotlight.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2022-12-07 11:46:562022-12-07 11:48:28Alique Topalian: Childhood Cancer and the Frightening Realities of the Survivorship Journey

Take Action

Make An Impact

We are relentless in improving the quality of care and life after a cancer diagnosis. Your support makes all the difference right now.

Make a Gift »

Join CPAT

The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

Share Your Story

NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.

STAY CONNECTED

Together we can improve cancer care for survivors! Sign up to be the first to know about cancer policy issues and ways to take action

  • This field is for validation purposes and should be left unchanged.

  • About
    • Our Mission
    • Our History
    • The 1986 Club
    • Our Team
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2022 State of Cancer Survivorship Survey
    • 2021 State of Cancer Survivorship Survey
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Survivorship Champions
    • Subscribe to NCCS Updates
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State-Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Cancer Convos Podcast
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • Ellen L. Stovall Award
      • 2022 Winners
      • Awardees
      • Sponsors
      • Committees
    • Cancer Policy Roundtable (CPR)
      • Fall 2022 CPR
      • Spring 2022 CPR
      • Fall 2021 CPR
      • Spring 2021 CPR
      • Fall 2020 CPR
      • Spring 2020 CPR
    • Cancer Policy and Advocacy Team (CPAT) Virtual Symposium 2022
    • 2022 State of Survivorship Survey Results
    • Webinars
  • Contact Us

National Coalition for Cancer Survivorship
8455 Colesville Road  |  Suite 930  |  Silver Spring, MD 20910
877-NCCS-YES  |  info@canceradvocacy.org
Privacy Policy  |  Terms and Conditions

Copyright © 1995-2023 by the National Coalition for Cancer Survivorship
National Coalition for Cancer Survivorship, NCCS, Cancer Survival Toolbox, and related Logos are registered in the United States as trademarks of the National Coalition for Cancer Survivorship.

Health Care Roundup: New Health Care Bills; NCCS Co-Founder Susie Leigh on Life... NCCS Starburst 250px NCCS Starburst 250px Health Care Roundup: Health Care Spending; Survivorship Care Delivery; Metastatic...
Scroll to top
Download the Survey Report

"*" indicates required fields

Fill out the form below, and we’ll send the survey report, detailed presentation, and infographic to your email.
Name*
I am a...*
Select any/all that apply.
Consent*
By downloading the survey materials, you will receive updates and information from NCCS via email, which you may unsubscribe from at any time. Your information will never be sold to any third parties.
This field is for validation purposes and should be left unchanged.

Get Updates From NCCS

Be the first to hear about cancer policy and survivorship issues! Subscribe and receive the biweekly NCCS Health Care Roundup, invites to webinars and events, and more.

  • This field is for validation purposes and should be left unchanged.

Connect With Us

Twitter     Facebook     Instagram     LinkedIn     YouTube

Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute