Cancer Policy & Advocacy Team
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.
CPAT Symposium 2016
Interested in Joining CPAT?
For more information about CPAT, contact Kelsey Nepote, Manager of Advocacy.
Watch Past CPAT Webinars
November 2, 2016
Cancer Moonshot: Symptom Management & Funding
In the webinar, Dr. Mayer walked through the process and structure of collaboration in the Moonshot initiative and described in detail her work on the Moonshot initiative’s Blue Ribbon Panel. Dr. Mayer highlighted the Blue Ribbon Panel’s recommendations, specifically focusing on the recommendation to minimize treatment side effects and what that means for cancer survivors. Ms. Holohan detailed how the Cancer Moonshot initiative could be funded in Congress, as well as potential barriers to achieving that funding. Ms. Holohan also talked about the 21st Century Cures Act, and the possibility it will be considered in the lame-duck session.
After their presentations, the speakers engaged in a short Q&A.
Additional Resources and Links
Deborah K. Mayer’s Presentation
Dr. Mayer’s Presentation Slide Deck [PDF]
Dr. Mayer discussed a couple of online resources in her presentation. These items include:
- Cancer Moonshot Task Force Report: This report describes activities and an implementation plan for achieving the Cancer Moonshot’s goals.
- Blue Ribbon Panel Report: This report was presented to the National Cancer Advisory Board in September. The final report describes 10 transformative research recommendations for achieving the Cancer Moonshot’s goal of making a decade’s worth of progress in cancer prevention, diagnosis, and treatment in just 5 years.
MK Holohan’s Presentation
September 21, 2016
Social Media Strategies for Patient Advocates
Watch the Webinar
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 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 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.
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.
May 25, 2016The 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:
- Knowledge and Evaluation Research Unit at Mayo Clinic
- Mayo Clinic Shared Decision Making National Resource Center
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.
November 19, 2015
In response to requests from members of our Cancer Policy & Advocacy Team (CPAT) for information about finding health insurance plans that can meet the needs of cancer survivors, on November 19, 2015, just as open enrollment for marketplace plans under the Affordable Care Act began, NCCS hosted the webinar “Strategies for Cancer Survivors to Implement When Choosing Health Insurance” with three experts on the topic.
Anne Kirchhoff, PhD, MPH is an Assistant Professor of Pediatrics at the University of Utah and an Investigator at the Huntsman Cancer Institute in the Cancer Control and Population Sciences Research Program. Dr. Kirchhoff’s research program focuses on health care needs and financial issues, and she has led several studies on late effects, employment, and health insurance coverage after cancer.
Elyse Park, PhD, MPH is an Associate Professor of Psychiatry at Harvard Medical School and an Assistant in Health Care Policy at the Mongan Institute for Health Policy/Medicine within Massachusetts General Hospital. Committed to the quality of care of cancer survivors, Dr. Park conducted a national study to examine underinsurance issues among adult survivors of childhood cancer as well as survivors’ familiarity with the Affordable Care Act.
Lynn Quincy, MA serves as the Director of the Health Care Value Hub at Consumers Union. An expert in health care who works on variety of health policy issues, including health insurance reform at the federal and state levels, Ms. Quincy is particularly interested in how people find affordable health coverage and make good health insurance choices.
Dr. Kirchhoff and Dr. Park presented their research on how cancer survivors consider health insurance, and Ms. Quincy provided insights into how cancer survivors can choose a health insurance plan.
In addition to the resources provided in the slides, below are resources that address webinar participants’ questions:
- Consumer Unions’ program on unexpected healthcare bills
- American Society of Clinical Oncologists’ webpage on Financial Considerations
- American Society of Clinical Oncologists’ webpage on Health Insurance Coverage of Clinical Trials
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.
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.
Peter Bach, MD, MAPP, Director of Memorial Sloan Kettering’s Center for Health Policy and Outcomes was the featured presenter. Dr. Bach is a physician, epidemiologist, writer, and recognized expert in healthcare policy whose work has been regularly featured in major scientific and lay press outlets such as the New England Journal of Medicine, Journal of the American Medical Association, and The New York Times. His articles are known to be thought-provoking and address the difficult questions in cancer care today.