National Coalition For Cancer Survivorship

ADVOCATES FOR CHANGES IN HOW THE NATION RESEARCHES,REGULATES,FINANCES & DELIVERS QUALITY CANCER CARE.

PUBLIC POLICY NCCS ADVOCATES FOR PUBLIC POLICY CHANGE TO ENSURE CANCER SURVIVORS HAVE ACCESS TO HIGH-QUALITY, EVIDENCE-BASED CANCER CARE. NCCS REPRESENTS THE PERSPECTIVE OF CANCER SURVIVORS IN PUBLIC POLICY DISCUSSIONS. WE CONVENE THOUGHT LEADERS, POLICYMAKERS, ADVOCATES, AND THE PRIVATE SECTOR AT THE NCCS CANCER POLICY ROUNDTABLES TO EXCHANGE IDEAS ABOUT THE MOST PRESSING POLICY ISSUES. OUR POLICY EFFORTS FOCUS ON QUALITY CANCER CARE, ACCESS TO CARE, AND HEALTH EQUITY.

CANCER POLICY & ADVOCACY TEAM (CPAT):THE CANCER POLICY & ADVOCACY TEAM (CPAT) ENGAGES MORE THAN 700 CANCER SURVIVORS AND CAREGIVERS FROM NEARLY ALL 50 STATES TO LEARN ABOUT PUBLIC POLICY ISSUES THAT AFFECT QUALITY CANCER CARE. CPAT PROVIDES MEMBERS TOOLS AND TRAINING TO BECOME EFFECTIVE ADVOCATES. THE PROGRAM INCLUDES AN IN-PERSON SYMPOSIUM, WITH TRAINING ON POLICY ISSUES AND ADVOCACY SKILLS, AND HILL DAY, AS WELL AS A MONTHLY NEWSLETTER, WEBINAR SERIES, MEMBERS-ONLY FACEBOOK GROUP, AND OTHER EDUCATIONAL MATERIALS. NCCS MATCHES CPAT MEMBERS WITH ADVOCACY OPPORTUNITIES, INCLUDING SPEAKING ENGAGEMENTS, MEDIA INTERVIEWS, RESEARCH REVIEW, AND PARTICIPATION ON COMMITTEES AND PROJECTS.THE GOAL OF THE PROGRAM IS TO TRAIN, USING A VARIETY OF METHODS, PATIENT ADVOCATES ON THE MOST PRESSING POLICY ISSUES FACING QUALITY CANCER CARE IN AN EFFORT TO FACILITATE THEIR ENGAGEMENT IN PUBLIC POLICY ADVOCACY TO ENSURE THE BEST POSSIBLE CARE. THE WEBINARS, E-NEWSLETTERS, ONLINE FORUM, AND IN-PERSON 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. THE INTERACTIVE PROGRAM FOCUSES ON THOSE POLICY AND ADVOCACY ISSUES THAT AFFECT THE NEEDS OF CANCER SURVIVORS FROM DIAGNOSIS TO TREATMENT AND THROUGH LONG-TERM SURVIVORSHIP CARE AND WILL CONSIDER POLICY ACTIVITIES THAT MAY FOSTER REFORMS TO MAKE THE CANCER CARE SYSTEM MORE RESPONSIVE TO SURVIVORS' NEEDS.

ELEVATING SURVIVORSHIP:ELEVATING SURVIVORSHIP IS A PATIENT- AND ADVOCATE-LED INITIATIVE TO IMPROVE SURVIVORSHIP CARE IN THE UNITED STATES. LAUNCHED IN 2018, ELEVATING SURVIVORSHIP (ELEVATE) WAS CREATED TO IDENTIFY GAPS IN SURVIVORSHIP CARE/SERVICES AND EMPLOY CANCER SURVIVOR ADVOCATES (AMBASSADORS) TO FILL THOSE GAPS IN THEIR LOCAL COMMUNITY. ELEVATE IS UNIQUE IN ITS DEPLOYMENT OF PATIENT LEADERS, PARTNERING WITH PROVIDERS AND OTHER COMMUNITY MEMBERS, TO IMPROVE THE DELIVERY OF, AND EDUCATION ABOUT SURVIVORSHIP CARE.

CANCER SURVIVORSHIP CHECKLIST:A CANCER SURVIVOR'S GUIDE," IS A TOOL TO HELP SURVIVORS NAVIGATE THE CANCER EXPERIENCE. THE CHECKLIST HELPS CANCER PATIENTS TO BE ACTIVELY ENGAGED IN THEIR CARE AS THEY PURSUE FOLLOW-UP CARE, MONITOR THEIRHEALTH STATUS, AND FIND SUPPORT FOR PSYCHO-SOCIAL NEEDS. NCCS PARTNERS WITH A VARIETY OF ORGANIZATIONS TO ENSURE WIDE DISSEMINATION OF THE CHECKLIST, IN BOTH HARD COPY AND ONLINE FORMATS, TO ENSURE THESURVIVORSHIP CHECKLIST REACHES SURVIVORS OF ALL TYPES AND STAGES OF CANCER, AGES, GEOGRAPHIC LOCATIONS, AND LEVELS OF HEALTH LITERACY.CANCER POLICY MATTERS BLOG:NCCS'S "CANCER POLICY MATTERS" BLOG PROVIDES COMMENTARY, ANALYSIS, AND INSIGHT INTO THE CANCER PATIENT PERSPECTIVE ON PRESSING HEALTH POLICY ISSUES. THE BLOG IS A RESOURCE FOR POLICY MAKERS, HEALTH CARE EXPERTS, PATIENT ADVOCATES, AND THE MEDIA AND COVERS ISSUES SUCH AS SYSTEMS OF CARE FOR CANCER SURVIVORS, IMPLEMENTATION OF THE ACA, THE QUALITY OF CANCER CARE, SHARED DECISION-MAKING AND PATIENT ENGAGEMENT, PAYMENT AND DELIVERY REFORMS, FUNDING FOR BIOMEDICAL RESEARCH, REVIEW AND APPROVALOF NEW ANTI-CANCER THERAPIES, AND THIRD-PARTY COVERAGE OF CANCER THERAPIES. NCCS DEVELOPS REGULAR CONTENT UPDATES, INCLUDING NCCS STAFF-GENERATED COLUMNS AND GUEST POSTS FROM CANCER SURVIVORS, NCCS'SPOLICY ADVISORS, AND EXPERTS IN THE HEALTH POLICY COMMUNITY.SURVIVORSHIP SURVEY:THE OBJECTIVE OF THE RESEARCH IS TO BETTER UNDERSTAND THE CANCER PATIENT AND SURVIVOR JOURNEY FROM A RANGE OF PERSPECTIVES. THESE INCLUDE: BUILDING ON 2018-2019 NCCS SURVEY FINDINGS, GET FEEDBACK FROM THOSE WHO ARE CONNECTED TO NCCS, AS WELL AS A MORE REPRESENTATIVE SAMPLE OF THE US ADULT CANCER POPULATION, INCLUDING TRADITIONALL UNDERSERVED AUDIENCES BETTER UNDERSTAND THE PATIENT EXPERIENCE INCULDING NEW QUESTIONS AROUND MINDSET, THE MUTIDISCIPLINARY TEAM, CLINICAL TRIALS AND HELP WITH SIDE EFFECTS LEARN MORE ABOUT PREPARATION , EXPERIENCES, AND NEEDS IN POST-TREATMENT INFORMATION ANDCARE, AND INTEREST IN VARIOUS SURVIVORSHIP RESOURCES DRILL DOWN ON EXPERIENCES WITH " REDEFINING FUNCTIONAL STATUS".