• Facebook
  • Rss
  • Twitter
  • Youtube
  • Store
  • Donate
NCCS - National Coalition for Cancer Survivorship
  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • 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
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us
  • Search
  • Menu Menu
  • 0Shopping Cart

Year-End MATCH (DEADLINE Dec 31): Donate & Make a Difference | Donate

NCCS News Cancer Policy Matters

NCCS Awarded American Institutes for Research Grant to Develop New Outcome Measure: “Return to Functional Status”

July 19, 2018/in Cancer News, Cancer Policy Blog, NCCS News Clinical Guidelines, Quality Cancer Care, Survivorship Care NCCS News /by actualize
UPDATE FEBRUARY 2020: Read a summary of this research project at www.canceradvocacy.org/RFS.

The National Coalition for Cancer Survivorship (NCCS) was awarded a grant from the American Institutes for Research (AIR), with support from the Robert Wood Johnson Foundation, to develop a new quality measure concept for “return to functional status.” NCCS will use a novel project design that convenes patient advocates to develop a conceptual definition of functional status, during and after cancer treatment. NCCS was the only patient advocacy organization selected in a highly competitive selection process.

“A ‘return to functional status’ quality measure is a novel concept that will measure what truly matters to cancer patients—getting their life back after treatment,” said NCCS CEO Shelley Fuld Nasso. “NCCS is uniquely positioned to move this important work forward. We are flipping the traditional model of quality measure development on its head by engaging patients to define the measure, with input from a group of technical experts, to produce a meaningful outcome measure. Too many quality measures assess processes, like whether a test was offered or pain was assessed, but not enough measure the outcome for people with cancer. We are thrilled to work with AIR and our partners in this effort to make the treatment and survivorship experiences for millions of cancer patients more patient-centered.”

Kristen McNiff, MPH, will serve as project lead. She brings over 20 years of experience in cancer quality, measure development and validation, and related policy. She has provided technical expertise at the American Society of Clinical Oncology (ASCO), and recently served as Vice President of Quality & Patient Safety at Dana-Farber Cancer Institute in Boston, MA.

Together with NCCS CEO Shelley Fuld Nasso, they will lead a team to develop, refine, and employ an innovative patient-led measure development approach. This approach will apply the best experts to each task: patients will define the outcomes of importance, and methodologists will provide recommendations regarding technical specification. The project will result in a patient-centric specification template that includes the information of most relevance to patient audiences. The AIR award will allow NCCS to develop patient-centered specifications for ‘return to functional status’ that are sufficiently detailed to allow for testing and validation in a subsequent initiative.

NCCS has assembled a stellar committee of experienced patient advocates, survivors who represent diverse cancer experiences and types of cancer, to define a measure concept that is meaningful to survivors. Committee member Rebecca Esparza said, “As a two-time cancer survivor, I appreciate that NCCS is taking a different approach to quality measurement that is driven by patient advocates and engages cancer survivors to define the concept of return to functional status and co-create the measurement priorities and patient-centered specifications. Today, although I am still cancer-free, I still suffer daily with side effects from my cancer treatments, including joint pain, chronic fatigue syndrome, fibromyalgia and neuropathy. I have become a champion for improving the quality of life for cancer survivors and not just being satisfied with simply surviving cancer, but thriving and living life to its fullest.”

# # #

Tags: cancer care, Cancer Survivorship, nccs, patient first, Patient Navigation
Share this entry
  • Share on Facebook
  • Share on Twitter
https://canceradvocacy.org/wp-content/uploads/2018/07/NCCS-News-Cancer-Policy-Matters.jpg 600 1200 actualize https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png actualize2018-07-19 14:22:382018-07-19 14:22:38NCCS Awarded American Institutes for Research Grant to Develop New Outcome Measure: “Return to Functional Status”
You might also like
affordable care act NCCS Position Statement on Actions to Undermine ACA
HeatherVSJ Guest Post: Mesothelioma Awareness and the Danger of Asbestos Exposure
20years Guest Post: Developing Clinical Solutions to Improve Survivorship Care: The Value of Partnership
Lindsay Houff hs sm My Takeaway from Hill Visits: Empathy is in Short Supply
ProtectOurCare 1024px ACA Update | April 14, 2017: Town Hall Headlines, Cost-Sharing Subsidies, the “Death Spiral”, and Trump’s Final “Market Stabilization” Rule
NCCS Starburst Thumbnail WCOE: Replacing the SGR Formula, Patient Advocate Speaks at FDA, and Dr. Peter Ubel talks Patient Needs
NCCS Starburst Thumbnail NCCS Names Shelley Fuld Nasso as CEO
AtulThumbnail WCOE: Elevating the Discussion on Living Well Until the End of Life

Latest News

Coronavirus feat

COVID-19 Vaccines and Cancer: A Conversation with Cancer Expert Otis Brawley, MD

March 1, 2021
The National Coalition for Cancer Survivorship (NCCS) hosted a conversation on February…
Read more
https://canceradvocacy.org/wp-content/uploads/2020/03/Coronavirus-feat.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2021-03-01 11:49:192021-03-02 16:15:47COVID-19 Vaccines and Cancer: A Conversation with Cancer Expert Otis Brawley, MD
Canceradvocacy org default image

National Quality Forum Names NCCS CEO Shelley Fuld Nasso to 2021 Leadership Consortium Roster

February 24, 2021
NOTE: This press release was originally published on the National Quality Forum (NQF)…
Read more
https://canceradvocacy.org/wp-content/uploads/2019/10/Canceradvocacy-org-default-image.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2021-02-24 21:01:392021-02-24 21:01:39National Quality Forum Names NCCS CEO Shelley Fuld Nasso to 2021 Leadership Consortium Roster
HHS Humphrey bldg 1200

NCCS and Other Cancer Groups Urge HHS to Keep Six Protected Classes in Medicare Part D Drug Plans

February 19, 2021
The National Coalition for Cancer Survivorship (NCCS) joined with the Cancer Leadership…
Read more
https://canceradvocacy.org/wp-content/uploads/2017/10/HHS-Humphrey-bldg-1200.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2021-02-19 15:06:392021-02-24 19:29:10NCCS and Other Cancer Groups Urge HHS to Keep Six Protected Classes in Medicare Part D Drug Plans

Take Action

Stovall Award

The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.

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

  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • 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
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • 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.

NCCS Joins Cancer Leadership Council Comment Letter Regarding the Drug Pricing... NCCS Policy Comments HHS bldg NCCS Starburst 250px Health Care Roundup: Trump Drug Pricing Plan; HHS Cuts ACA Navigator Funding;...
Scroll to top

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