• Facebook
  • Twitter
  • Youtube
  • Instagram
  • LinkedIn
  • Rss
  • Store
  • Donate
NCCS - National Coalition for Cancer Survivorship
  • About
    • Our Mission
    • Our History
    • Our Team
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 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
      • Nominations
      • Awardees
      • Committees
      • Sponsors
    • Cancer Policy Roundtable (CPR)
      • Spring 2022 CPR
      • Fall 2021 CPR
      • Spring 2021 CPR
      • Fall 2020 CPR
      • Spring 2020 CPR
    • 2021 State of Survivorship Survey Results Briefing
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2021
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Webinars
  • Contact Us
  • Search
  • Menu Menu
  • 0Shopping Cart

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

Guest Post Hillary Stires

How the Patient Perspective Improved My Cancer Research and Changed My Career Path

August 20, 2019/in Cancer News, Cancer Policy Blog, NCCS News NCCS News /by actualize
Hillary Stires, PhDGuest Post by Hillary Stires, PhD
Cancer Researcher and Advocate
The first time I heard the words “you have cancer,” I was sitting in the doctor’s office with my best friend Katie. We were both 28 years old. Katie had a lump removed from her breast the Monday before Thanksgiving and I was home in New Jersey a few days before the holiday to hang out with her post surgery. We were supposed to go to DSW that Wednesday morning when she got a call that her doctor wanted to see her that day.

I collapsed on the floor of my parent’s kitchen, weeping in anticipation of what we were about to embark on.

During the previous 6 months, I had been studying breast cancer as a postdoctoral fellow at Georgetown University’s Lombardi Comprehensive Cancer Center. The 6 years before that I studied at Rutgers University earning my PhD focused on breast cancer. I thought those experiences would have prepared me more for Katie’s diagnosis. Instead, I felt completely lost.

I was amazed at how little I’d actually learned about how cancer affects the person as a whole during my six years of training. For example, I could tell you how the HER2 protein makes cells grow and divide, but I didn’t know the side effects of the therapies that blocked this process or the normal course of treatment. After spending the holidays in New Jersey, including an extended week going to chemo with Katie, I returned to Washington, DC to write grants and continue my postdoc.

I noticed that working with advocates was transforming my research, and ultimately my career, as I began to factor in the human aspect of cancer into my research. More importantly, I realized that I was one of a few research scientists engaging in this kind of patient-based work.

To be fair, I started working with patient advocates just before Katie’s diagnosis — I presented my work to the Georgetown Breast Cancer Advocates (GBCA) a few months after starting at Lombardi and submitted a Susan G. Komen grant that required a patient advocate mentor. I’d also started tweeting with #BCSM (Breast Cancer Social Media) on Monday nights, which was a surprise blessing as that community became my support system following Katie’s diagnosis.

Over time, Katie’s treatments came to an end, but I continued working with patient advocates online and in person. I attended conferences and sat with the patient advocates instead of my scientist peers, where I was able to explain complicated concepts about breast cancer and helped clarify confusing topics. I noticed that working with advocates was transforming my research, and ultimately my career, as I began to factor in the human aspect of cancer into my research. More importantly, I realized that I was one of a few research scientists engaging in this kind of patient-based work. This led me to explore ways to improve relationships between patient advocates and researchers so other scientists could experience similar benefits.

I started following the National Coalition for Cancer Survivorship (NCCS) on Twitter after I met some of the #BCSM crew at a live “tweet up” in DC during the NCCS Cancer Policy and Advocacy Team (CPAT) Symposium in 2018. I was amazed at how much the mission resonated with me from a personal level, but also as a cancer research scientist. I was already thinking about pivoting my career into health policy, but I also knew I wanted to keep building relationships between patient advocates and my community of research scientists. So, I applied to NCCS’ Elevating Survivorship program to become an Elevate Ambassador and develop a forum to encourage the development of those relationships.

My hope is that many more research scientists, and not just those who hear the words “you have cancer,” will engage with cancer advocates early and often, recognize the value of these relationships, and incorporate that knowledge into their research.
I was thrilled when I was selected to be an ambassador and the experience has exceeded my expectations. I attended our two-day training session in Arlington, VA, and was so proud to be part of such an inspiring and dedicated group of people. We shared ideas about the programs we were building, learned about the importance of survivorship for the cancer community, and established friendships that I know I’ll have for a lifetime.

The goal of my project is to build out a program for patient advocates and cancer research scientists (mostly graduate students, postdocs, and oncology fellows) to meet and learn from one another. Last month, on July 12, I oversaw the first workshop for the Cancer Trainee Advocate Program (CTAP) at Lombardi. We had all the graduate students and some of the postdocs from the tumor biology program and about 12 patient advocates – most of whom had been or were currently being treated at Lombardi.

After a presentation on the value of working together, patient advocates and research trainees had roundtable discussions with a list of questions about research, the patient perspective, and ways to work together to guide the discussion. (Many of the questions for the roundtable discussion came from the patient advocate community on Twitter — many thanks to all their support!)

The trainees presented posters about their work and advocates asked questions for clarity and about impact. Additionally, the advocates had an opportunity to walk through the research labs and see what cancer cells look like in a culture dish. The workshop was a great primer to start building relationships to improve research through collaborative grant submissions and other cancer advocacy work.

My favorite part about this program is that the goals benefit both groups: Patient advocates can share their experiences and learn about cancer research from the people completing it, and trainees improve their science communication skills when explaining their research and gain a perspective about cancer they normally don’t learn about in a classroom. The next phase is to have a few others pilot the program at their institutions. After that, I’ll work with a handful of research trainees and patient advocates to build a website and a toolkit so other institutions can emulate the program.

My hope is that many more research scientists, and not just those who hear the words “you have cancer,” will engage with cancer advocates early and often, recognize the value of these relationships, and incorporate that knowledge into their research. Not everyone confronts cancer as closely as their best friend, loved one, or themselves, and I hope fewer will. But I’m grateful for the catalyst it was in my life and my work to help facilitate more relationships between patient advocates and research scientists to improve cancer research.

# # #

About the Author: Dr. Hillary Stires completed her PhD at Rutgers University and is a postdoctoral research fellow at Georgetown University’s Lombardi Comprehensive Cancer Center, studying how hormones influence breast cancer development and therapy resistance. Because of her best friend’s breast cancer diagnosis and her experiences tweeting with patient advocates, she decided to leave academia for a career in health policy but continues to work to improve relationships between patient advocates and research scientists as an NCCS Elevate Ambassador.

You can find Dr. Stires on Twitter at @HillStirSci.

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 Survivorship, Guest Post, research
Share this entry
  • Share on Facebook
  • Share on Twitter
  • Share on WhatsApp
  • Share on LinkedIn
https://canceradvocacy.org/wp-content/uploads/2019/08/Guest-Post-Hillary-Stires.jpg 600 1200 actualize https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png actualize2019-08-20 11:15:542020-12-31 12:12:58How the Patient Perspective Improved My Cancer Research and Changed My Career Path

Latest News

Beyond the Checkbox: Cancer Survivorship Care Delivery in the Community - Dr. Crystal Labbato

Webinar – Beyond the Checkbox: Delivering Meaningful Cancer Survivorship Care in a Community Setting

May 20, 2022
Last week, NCCS hosted a conversation with cancer control expert and epidemiologist Otis Brawley, MD. NCCS CEO Shelley Fuld Nasso moderated the discussion. “We knew exactly who we wanted to be our first guest speaker in this series. Dr. Otis Brawley is a Bloomberg Distinguished Professor at Johns Hopkins University, an oncologist and an epidemiologist. [...]
Read more
https://canceradvocacy.org/wp-content/uploads/Beyond-the-Checkbox-Crystal-Labbato.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2022-05-20 13:39:272022-05-20 13:39:27Webinar – Beyond the Checkbox: Delivering Meaningful Cancer Survivorship Care in a Community Setting
Michelle Mollica PhD Webinar Survivorship Needs for People with Metastatic and Advanced Cancers

Webinar: Survivorship Needs for People Living with Advanced and Metastatic Cancers

May 6, 2022
Last week, NCCS hosted a conversation with cancer control expert and epidemiologist Otis Brawley, MD. NCCS CEO Shelley Fuld Nasso moderated the discussion. “We knew exactly who we wanted to be our first guest speaker in this series. Dr. Otis Brawley is a Bloomberg Distinguished Professor at Johns Hopkins University, an oncologist and an epidemiologist. [...]
Read more
https://canceradvocacy.org/wp-content/uploads/Webinar-Michelle-Mollica-Metastatic-Survivorship-Needs.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2022-05-06 11:32:162022-05-06 12:35:15Webinar: Survivorship Needs for People Living with Advanced and Metastatic Cancers

Erin McGee Ferrell: The Art of Cancer Advocacy

May 5, 2022
Advocate Spotlight May 2022 - Erin McGee Ferrell Erin McGee Ferrell’s cancer…
Read more
https://canceradvocacy.org/wp-content/uploads/Erin-McGee-Ferrell-Advocate-Spotlight-1200px.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2022-05-05 12:00:402022-05-05 12:03:28Erin McGee Ferrell: The Art of Cancer Advocacy

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
    • Our Team
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 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
      • Nominations
      • Awardees
      • Committees
      • Sponsors
    • Cancer Policy Roundtable (CPR)
      • Spring 2022 CPR
      • Fall 2021 CPR
      • Spring 2021 CPR
      • Fall 2020 CPR
      • Spring 2020 CPR
    • 2021 State of Survivorship Survey Results Briefing
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2021
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • 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 © 1995-2021 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: Medicare Payments for CAR-T; Cancer Screenings in Older... NCCS Starburst 250px Health Care Roundup: What President Trump’s Health Care Plan Might Include;...
Scroll to top
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