Cancer Policy & Advocacy Team (CPAT)

NCCS CPAT Members advocate against health care repeal on Capitol Hill, June 2017

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.

Past CPAT Symposia

Highlights from the 2018 CPAT Symposium and Hill Day »
Highlights from the 2017 CPAT Symposium and Hill Day »

Highlights from the 2016 CPAT Symposium »
Read about CPAT members’ symposium experiences »

Interested in Joining CPAT?

For more information about CPAT, contact us at cpat@canceradvocacy.org.


Watch Past CPAT Webinars

Redefining Functional Status: A Patient-Led Quality Measurement Effort

Webinar Video – Redefining Functional Status: A Patient-Led Quality Measurement Effort

“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 »

“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.

Topics discussed include:

Download the webinar slide deck »

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.

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.

Learn More About CCPCA » CCPCA Toolkit for Meeting Your Legislators »
Understanding Fear of Cancer Recurrence

NCCS Webinar Video: “Understanding Fear of Cancer Recurrence”

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

Sarah C. Reed, MSW, MPH, PhDAbout 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 »

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

CCPC Act LogoOn 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:

Social Media Strategies for Patient Advocates

September 21, 2016

Social Media Strategies for Patient Advocates

Facebook, Twitter, Instagram, Snapchat… We’re all familiar with the incredible impact these and other social media platforms have in our society. That impact applies to advocacy as well. Three patient advocates, AnneMarie Ciccarella, Alicia Staley, and Lori Marx-Rubiner, in addition to NCCS Communications Director Dan Weber, address how to use social media to increase your effectiveness as a patient advocate. Further, they talk about how to use the strengths of different social media platforms to engage the political community, scientific community, and patient advocate community.

Watch the Webinar

 

Speaker Bios

AnneMarie CiccarellaAlicia StaleyLori Marx-RubinerDan Weber
AnneMarie Ciccarella

AnneMarie Ciccarella
@chemobrainfog

AnneMarie Ciccarella is a breast cancer patient, ten years post treatment who remains actively involved in many areas of advocacy. She serves as a consumer reviewer on the Department of Defense CDMRP and was appointed Scientific Review Office for METAvivor Research and Support commencing with their 2015 grant cycle. AnneMarie reviews manuscripts for The BMJ. A three-time participant in the AACR Scientist – Survivor program, she now serves as an advocate mentor.

She has presented posters at annual AACR annual meetings focusing on the role social media plays in facilitating the work of patient advocates and highlighting the importance of patient partners throughout the entire continuum of care. She was an invited speaker at a several high profile meetings including AACR and SWOG and is currently serving as a patient advocate on a number of ongoing grants.

Understanding the complexity of navigating a cancer diagnosis and the difficulty that may be associated with the decision making process, AnneMarie has lobbied on the Hill to be sure every patient has access to quality information. Many things can affect outcomes, but geography and lack of adequate information should never be part of that equation. In an effort to close this gap, she shares information via her blog and on social media. Sandwiched between her mom, who was diagnosed with metastatic disease decades after her initial primary diagnosis, and her daughter, who recently had her first scare and is now being followed very closely, AnneMarie is uniquely poised to appreciate the need for of patients across the entire spectrum.

Alicia Staley

Alicia Staley
@stales

Alicia Staley is the Patient Advocacy & Product Manager at Cure Forward, a start-up company based in Boston, MA. She works at Cure Forward to help cancer patients find clinical trials based on the patient’s genomic data. Helping cancer patients use social media and social networks to build powerful relationships with their care teams is her focus.

Alicia is a three-time cancer survivor, first diagnosed with Hodgkin’s disease as a sophomore at Syracuse University. Ms. Staley actively shares what she learned throughout her cancer journey to improve other patients’ experiences.

She is a member of the Tufts Medical Center Patient & Family Advisory Council and Quality Care Committee.

She regularly speaks at conferences throughout the US. She has presented at Livestrong’s Rev2014, American Society for Breast Surgeons Annual Meeting, South by South West Interactive Conference (SXSWi), 140 Boston, and Social Media for Pharma. As an inspirational speaker, Alicia reaches many different audiences, providing insight into life as a 25+ year cancer survivor and support in efficient, effective ways.

Lori Marx-Rubiner

Lori Marx-Rubiner
@regrounding

Lori Marx-Rubiner was first diagnosed with breast cancer in 2002. As a young woman and mother of a three year old, it was clear that finding connections and resources was going to be a challenge – she simply didn’t fit the mold. After completing primary therapy, Lori was committed to using the experience as a breast cancer advocate, in hopes of helping others. In 2011, after nine years of being NED (no evidence of disease), Lori was diagnosed with metastatic breast cancer that had spread to her bones. Despite returning to treatment, she has redoubled her efforts to change the face of breast cancer.

Lori earned her Masters of Social Work and Masters of Communal Service in 1990, and has worked in non-profit management for over 25 years. Her advocacy spans individual support for patients, scientific review, and public policy efforts. She is also a graduate of the National Breast Cancer Coalition’s Project LEAD Institute. She has served as an advocate peer reviewer for the Dept. of Defense Breast Cancer Research Program and PCORI. She is Vice-Chair of the California Breast Cancer Research Program, is one of the founding advocates for CancerBase – a direct-from-patient global data collection effort, works with the Dr Susan Love Research Foundation, and is a member of the steering committee for #BCSM (twitter’s Breast Cancer Social Media chat group).

She lives in Los Angeles with her husband of nearly 30 years, John, and their almost 18 year old son Zachary, and marvels that the complex systems of our bodies work at all.

Dan Weber

Dan Weber

Dan Weber joined NCCS as the Director of Communications in February 2016. In this role, he guides the strategy regarding outreach to the media and other stakeholders, and ensures that the communications, website, and public relations messages consistently articulate NCCS’ mission and priorities. He also works closely with other senior members within the organization as the communications partner to support the fundraising and policy objectives.

Prior to joining NCCS, Dan served as the Director of Communications for Congresswoman Donna F. Edwards (MD-4) for over eight years, where he gained experience on political campaigns and on Capitol Hill that involved all aspects of communications and public relations. Dan is excited about the opportunity to apply what he has learned to help build upon and expand NCCS’ communications outreach. As a cancer survivor himself, Dan understands first-hand the importance of the NCCS mission for patients, survivors, caregivers, and families.

2016: A Conversation Around Shared Decision-Making and a Patient Revolution

May 25, 2016

Victor Montori, Webinar Speaker

Featured Speaker
Victor Montori, MD, MSc
Professor of Medicine
Mayo Clinic

The theme of the April 2016 issue of Health Affairs was Patients’ and Consumers’ Use of Evidence, but one article in particular stood out: “Shared Decision Making: The Need for Patient-Clinician Conversation, Not Just Information,” written by Ian Hargraves, Annie LeBlanc, Nilay D. Shah, and Victor M. Montori of the Mayo Clinic in Rochester. An expert in shared decision-making, Dr. Montori speaks in this webinar about their article, which is consistent with NCCS’ work on shared decision-making and resources such as our Know Yourself worksheet. Dr. Montori is also joined by his colleague Maggie Breslin, and together they speak about The Patient Revolution, a project whose website helps patients talk to their healthcare providers more effectively in order to get the care that they want.

To learn more about Dr. Montori’s efforts, you can visit these webpages:

In addition, Adriane Casalotti, deputy chief of staff for Congresswoman Lois Capps of California who has championed the Planning Actively for Cancer Treatment (PACT) Act, provides an update on the legislation and the atmosphere on the Hill as we prepare for our Hill Day around the PACT Act on Tuesday, June 28.

2015: Strategies for Designing a System for Survivorship Care

June 3, 2015

This webinar focuses on the design of a health care system to deliver quality survivorship care. The program reviews a number of issues, including where survivors should receive survivorship care, how they can manage transitions in care, and whether clinical practice guidelines can help them with managing their care. In addition, we will also discuss insurance coverage of survivorship care.

Furthermore, the Planning Actively for Cancer Treatment (PACT) Act is also discussed. The PACT Act will ensure that every Medicare-eligible cancer patient has access to cancer care planning and coordination to improve patient health and reduce inefficiencies in the system. NCCS has championed this legislation for ten years and we are working with members of Congress to introduce the PACT Act in the coming weeks.

Smita Bhatia, MD, MPH, Co-Director of the Center for Outcomes and Effectiveness Research and Education at the University of Alabama Birmingham Comprehensive Cancer Center is the featured presenter.

View Webinar

2015: Patient-Care Team Communication

April 29, 2015

Deborah Mayer, PHD, RN, Professor in the Adult and Geriatric Health Division at the University of North Carolina (UNC) and the UNC Lineberger Director of Cancer Survivorship was the feature presenter of the “Patient-Care Team Communication: How Can the Survivor Prepare to Manage a Lifetime of Care?” Webinar.

Dr. Mayer is an advanced practice oncology nurse who has consulted with organizations on issues to improve cancer care and has over 30 years of cancer nursing practice, education, research, and management experience. Dr. Mayer earned a PhD from the University of Utah, her MSN from Yale University, her BSN from Excelsior College, her Nurse Practitioner Certificate from the University of Maryland, and her diploma from Pennsylvania Hospital School of Nursing.

View Webinar


2020 CPAT Program Supporters

GenentechCPAT Sponsors 2020