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. Driven by the energy and experiences of the CPAT Steering Committee, CPAT provides cancer survivors and caregivers with tools and training that build upon their personal experiences to become effective advocates to improve cancer care.
The webinars, e-newsletters, online forum, and conferences for CPAT members offer advocates different ways to learn and to discuss current issues, programs, and policies that affect the cancer community and to take action as appropriate.
A record-breaking number of attendees joined #CPAT20. Advocates from around the country learned from renowned experts, heard from all-star advocates, and leveraged their personal stories to improve cancer care. Whether it was a brand-new advocate or seasoned Symposium attendee, attendees chose their own adventure to help find their voice, or fine-tune it. Watch CPAT Symposium Recordings »
Redefining Functional Status: A Patient-Led Quality Measurement Effort
Webinar Video – Redefining Functional Status: A Patient-Led Quality Measurement Effort
Posted: February 7, 2020
“What would health care measurement look like if it reflected what patients and caregivers say matters most to them?”
Quality measurement in cancer care is primarily focused on ensuring patients get the right tests and treatments, not whether those treatments help cancer survivors live well during and after cancer. NCCS embarked on an initiative to define quality measures by engaging survivors themselves to identify what’s important to measure.
NCCS was awarded a grant from the American Institutes for Research (AIR), with support from the Robert Wood Johnson Foundation, to lead a group of cancer survivors in defining a new quality measure concept: redefining functional status (RFS) following a cancer diagnosis. With a unique project design that put patients in the driver’s seat, NCCS was the only patient advocacy organization selected in a highly competitive selection process.
In this webinar, you will:
Learn how cancer survivors defined the concept of “redefining functional status” and how to measure it;
Hear from project co-leads Shelley Fuld Nasso (NCCS) and Kristen McNiff (KM Healthcare Consulting), as well as survivor committee members, about the project methodology, findings, and lessons learned;
Understand the value in patient advocacy organizations taking a leading role in quality measurement development.
Together, we hope to leverage this project to shape quality measurement and ensure cancer survivors live well during and after cancer treatment.
“Patient-centered measurements are hugely important and I didn’t recognize its value prior to participating in this study. Patients aren’t always comfortable letting their provider know what they are experiencing and having a quality measurement that allows a patient to share their concerns, issues or changes can overcome the fear of speaking up.”
– Matt Goldman, Multiple Myeloma Survivor and RFS Committee Member
“This project has allowed me to step back and look at the larger impact of disease and treatment beyond my own experience. Every individual is unique and affected differently when faced with diagnosis and treatment options. One size, one measure does not fit all patients.”
– Allen Hirsch, Head & Neck Cancer Survivor and RFS Committee Member
2019: A Year in Review and a Look Ahead
December 19, 2019
2019 was an exciting and busy year for NCCS. From new advocate-led projects seeking to improve cancer care, to legislation introduced in the House of Representatives, we have worked to transform survivorship care at every level.
In this webinar, NCCS Senior Policy Manager Lindsay Houff and NCCS CEO Shelley Fuld Nasso take a look at these 2019 efforts and discuss upcoming opportunities for CPAT Members to get involved in 2020.
2019: H.R. 3835, Cancer Care Planning Legislation - What it Does and How to Get Involved
Webinar: CCPCA – What It Does and How to Get Involved
In this webinar, NCCS CEO Shelley Fuld Nasso talks about why H.R. 3835, the Cancer Care Planning and Communications Act (CCPCA) is so important and how you can advocate for the bill at home by scheduling meetings with your Members of Congress’ district offices.
NCCS Webinar Video: “Understanding Fear of Cancer Recurrence”
Posted: October 29, 2018 Those with a cancer experience are all too familiar with the anxiety that many experience wondering and waiting if and how cancer may return. New research is helping shed more light on what exactly “fear of cancer recurrence” means as a measurable patient outcome, psychological and emotional factors that may increase or decrease it, and what steps can be taken by patients and providers to help reduce it. Joining us to discuss fear of recurrence is Sarah Reed, MSW, MPH, PhD, of the Betty Irene Moore School of Nursing at UC Davis. You’ll hear Dr. Reed discuss new research—including her own—that seeks to more clearly define fear of recurrence and its impact on cancer patients. Read more about Dr. Reed’s background below.
Mindfulness-Based Stress Reduction (MBSR) – Dr. Reed mentioned MBSR during the webinar as a potential therapy to alleviate Fear of Cancer Recurrence. Below are links to resources and books she recommends on the topic.
Mindfulness-Based Cancer Recovery: A Step-by-Step MBSR Approach to Help You Cope with Treatment and Reclaim Your Life, by Linda Carlson, PhD, RPsych, and Michael Speca, PsyD, RPsych – Amazon.com link
Being Well (Even When You’re Sick): Mindfulness Practices for People with Cancer and Other Serious Illnesses, by Elana Rosenbaum – Amazon.com link
Here for Now: Living Well With Cancer Through Mindfulness, by Elana Rosenbaum – Amazon.com link
About the Presenter: Sarah Reed, MSW, MPH, PhD
Sarah Reed is a postdoctoral scholar in the Betty Irene Moore School of Nursing at UC Davis, mentored by Associate Dean for Research Janice Bell. Her research focuses on vulnerable populations and issues of health inequality, including the effect of health transitions on mental health, particularly in cancer survivors.
Reed’s ongoing work examines psychosocial concerns; specifically, fear of cancer recurrence and health behaviors in cancer survivors — addressing a significant gap in the understanding of the psychosocial health and related needs of the growing population of cancer survivors. She collaborates with a range of interprofessional researchers on projects aimed to improve health outcomes of patients with cancer.
Prior to joining the School of Nursing, Reed was an assistant professor in the Jane Addams College of Social Work at the University of Illinois, Chicago (UIC), where her work focused on cancer and issues related to racial, social and economic justice.
She has been a clinical social worker for close to two decades, most recently in the Adult Survivorship Program at the Dana-Farber Cancer Institute in Boston. There, Reed developed and managed psychosocial survivorship care and programs.
2018: Cancer Care Planning and Communications Act, H.R. 5160: What It Does and How To Get Involved
March 21, 2018
Cancer Care Planning and Communications Act, H.R. 5160: What It Does and How To Get Involved
On March 7, Reps. Mark DeSaulnier (D-CA) and Ted Poe (R-TX) introduced the bipartisan Cancer Care Planning and Communications (CCPC) Act, H.R. 5160—legislation that holds real promise for improving cancer care for survivors and their families. The CCPC Act is a priority for NCCS and will establish a new service within Medicare for comprehensive cancer care planning.
Cancer care planning is more about the conversation and the process than the piece of paper. Care planning encourages shared decision-making between patients and their cancer care teams, and supports informed decisions as treatment choices are becoming increasingly complex.
NOTE: Due to a technical error, the first six minutes of the webinar were not recorded.
During the webinar you will hear from:
Lee Jones, patient advocate and Cancer Policy and Advocacy Team (CPAT) Steering Committee Member
Jill Beavers-Kirby, DNP, MS, ACNP-BC, patient advocate and health care provider
Shelley Fuld Nasso, NCCS CEO
Lindsay Houff, NCCS Public Policy Manager
Our speakers will discuss the importance of receiving a care plan and what happens if these conversations do not take place, including increased burden on patients and families who must coordinate care, as well as, the burden on the healthcare system as uncoordinated care has the potential to result in unnecessary treatments and resources.
More than 40 patient and provider groups and cancer centers recognize the importance of cancer care planning and have endorsed the CCPC Act.
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.
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.
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NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.
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