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?”

Background

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.

Download the webinar slide deck »

Read more about the Redefining Functional Status project »

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.

Topics discussed include:

• NCCS Survivorship Survey Results.
• The Elevating Survivorship program.
• Highlights of advocacy work done by CPAT Members in 2019.
• An update on NCCS’s Redefining Functional Status (RFS) project.
• What’s in store for 2020?

Download the webinar slide deck »

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.

Watch on YouTube »

Download the webinar slide deck » [PDF]
“Telling Your Story” worksheet » [PDF]

CCPCA Toolkit – Meet Your Members of Congress During August Recess

NCCS created a step-by-step guide to walk you through the process of setting up meetings with your legislators while they are at home during recess.

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.

Fear of Cancer Recurrence Resources

Download the webinar slide deck [PDF]

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.

• The Center for Mindfulness at UMass Medical School has a website with number of resources about MBSR, including a searchable database where you can find an MBSR program near you.
• 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.

This webinar is presented by NCCS as part of our educational efforts for our Cancer Policy and Advocacy Team (CPAT) program. Learn more about the CPAT program »

Watch more CPAT Webinars »

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.

Webinar Info

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.

Useful links discussed in the webinar:

• Download the slide deck from this webinar [PDF] »
• Download the CCPC Act Fact Sheet »
• Contact your representative about the CCPC Act and find more resources »