NATIONAL PATIENT ADVOCATE FOUNDATION
421 BUTLER FARM ROAD, HAMPTON, VA 23666 www.npaf.org

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Organizations Filed Purposes: NPAF IS FOCUSED ON CREATING FORUMS FOR HEALTHCARE REFORM DISCUSSIONS, VOLUNTEER TRAINING AND ACTIVITIES THAT DRAW A BROAD ARRAY OF STAKEHOLDERS FROM THE HEALTHCARE COMMUNITIES TOGETHER TO FOSTER EDUCATION AND ENGAGEMENT AT THE COMMUNITY, STATE, AND NATIONAL LEVELS. NPAF HAS DEVELOPED A SERIES OF STRATEGIES FOR ACCOMPLISHING THIS GOAL THROUGH ITS POLICY CONSORTIUM, VOLUNTEER ADVOCACY PROGRAM, PATIENT ACTION LEAGUE (PAL) GRASSROOTS ENGAGEMENT, AND THE DIRECT REPRESENTATION OF THE INTERESTS OF THE PATIENTS AND FAMILIES SERVED THROUGH PATIENT ADVOCATE FOUNDATION (PAF), NPAF'S SISTER ORGANIZATION.

NATIONAL PATIENT ADVOCATE FOUNDATION (NPAF) IS A NON-PROFIT ORGANIZATION THAT BRINGS PATIENT AND CAREGIVER VOICES TO HEALTH SYSTEM DELIVERY REFORM. NPAF DEVELOPS AND DRIVES INITIATIVES PROMOTING EQUITABLE ACCESS TO AFFORDABLE QUALITY HEALTH CARE THROUGH POLICY ACTION AND PUBLIC AND PRIVATE PARTNERSHIPS.

NPAF'S POLICY AND FIELD ADVOCACY PROGRAM HAS CURATED A STRONG AND COMMITTED NETWORK OF SKILLED PATIENT ADVOCATES AS GRASSROOTS VOLUNTEERS. OUR VOLUNTEER PROGRAM CREATES ENGAGEMENT OPPORTUNITIES ON KEY PERSON-CENTERED PATIENT AND CAREGIVER PRIORITIES THROUGH ISSUES EDUCATION, SKILLS AND RESOURCES DEVELOPMENT AND INNOVATIVE CAMPAIGNS. NAPF INVESTED CONSIDERABLE STAFF EFFORT AND ORGANIZATIONAL RESOURCES IN BUILDING NEW VIRTUAL ASPECTS OF THIS PROGRAM TO ENHANCE AND EXPAND THE ACTIVITIES OF OUR VOLUNTEERS NATIONWIDE WHILE FOSTERING DEEPER RELATIONSHIPS AND CONNECTIONS AMONG THEM.PATIENT ACTION LEAGUE (PAL) IS A CENTRAL ELEMENT OF NPAF'S VOLUNTEER PROGRAM, DESIGNED TO BOOST GRASSROOTS TRAINING AND MOBILIZATION THAT BROADENS THE REACH OF NPAF'S PERSON-CENTERED CARE AGENDA. THROUGHOUT THE YEAR, PAL OFFERS A SERIES OF CAMPAIGNS, COMMUNICATIONS AND OTHER ACTION OPPORTUNITIES FOR ADDRESSING PATIENT AND CAREGIVER PRIORITIES IN HEALTH CARE REFORM. CURRENT ISSUES INCLUDE INSURANCE COVERAGE ENROLLMENT (GET COVERED), CARE PLANNING (BE A HERO. MAKE A PLAN), MEETING CAREGIVER NEEDS (CAREGIVERS COUNT), AND REINFORCING THE IMPORTANCE OF FINANCIAL AND SOCIAL NEEDS NAVIGATION SERVICES. PAL ALSO PROVIDES "CAN WE TALK" FORUMS AND RESOURCES FOR SOCIALIZING THE CONCEPT OF PERSON-CENTERED CARE AMONG VARIOUS AUDIENCES. PAL PROGRAMS HELP EXPAND THE REACH OF VARIOUS COMMUNITY AND NATIONAL ALLIANCES AND COALITIONS DEDICATED TO PERSON-CENTERED CARE.

THE POLICY CONSORTIUM BRINGS TOGETHER A DIVERSE GROUP OF ADVOCATES, EXPERTS AND GRASSROOTS ACTIVISTS TO DISCUSS THE MOST PRESSING ISSUES OF THE DAY, ALONG WITH PATIENT ADVOCATE FOUNDATION CASE MANAGERS AND PATIENTS THEY'VE SERVED. NPAF CONVENES PEOPLE FROM AROUND THE COUNTRY, FROM DIVERSE BACKGROUNDS AND SOCIOECONOMIC CIRCUMSTANCES, WHO HAVE BEEN DIRECTLY IMPACTED BY THE FEATURED ISSUE. THE POLICY CONSORTIUM IS ANCHORED BY DATA. IT FEATURES REAL, DE-IDENTIFIED PATIENT DATA FROM THE PATIENT ADVOCATE FOUNDATION, HIGHLIGHTING LIVED PATIENT EXPERIENCES AND TRENDS OVER TIME. PAST POLICY CONSORTIUMS HAVE LED TO DIRECT ACTION ON ISSUES AS DIVERSE AS WELLNESS COVERAGE, TRANSPORTATION ACCESS AND SHARED DECISION-MAKING. THERE ARE TWO MEETINGS PER YEAR AS WELL AS ONGOING COMMUNICATIONS AND MATERIALS RELATED TO THE PARTICULAR MEETING TOPICS, SUCH AS NEWSLETTERS, VIDEO CONTENT, ISSUE BRIEFS, AND PEER-REVIEWED PUBLICATIONS.

PAF'S PATIENTS WHO FACE SERIOUS ILLNESS AND DISABILITY AND THEIR CAREGIVERS HAVE ALWAYS HAD TO CONTEND WITH THE FINANCIAL IMPACT OF THEIR CARE ON THEIR LIVES. THOSE WHO HAVE NO INSURANCE OR ARE UNDER-INSURED HAVE SUFFERED THE HIGHEST LEVEL OF FINANCIAL TOXICITY, BUT PEOPLE OF ALL SOCIOECONOMIC BACKGROUNDS FEEL THE EFFECTS OF THE COSTS OF THEIR CARE. MOUNTING MEDICAL BILLS, INCREASING COPAYS AND COST SHARING AND THE EMERGENCE OF MORE EFFECTIVE BUT HIGH-PRICED TREATMENTS FOR MANY CONDITIONS ALL CONTRIBUTE TO THE FINANCIAL BURDEN. COSTS-OF-CARE INFLUENCE DECISIONS ABOUT TREATMENT, BUT ALSO HAVE A SIGNIFICANT IMPACT ON THE LIVES OF PATIENTS AND THEIR FAMILIES. IT IS NOT UNUSUAL FOR PEOPLE TO HAVE TO CHOOSE BETWEEN BUYING GROCERIES OR PAYING FOR THEIR MEDICAL CARE. IT IS CRITICAL THAT PATIENTS AND THEIR PROVIDERS TALK ABOUT COST-OF-CARE ISSUES AND THAT THESE CONVERSATIONS ARE INCORPORATED INTO THE CLINICAL WORKFLOW. NPAF'S INITIATIVE FOCUSING ON COST OF CARE CONVERSATIONS IS A MULTI-YEAR, MULTI-FACETED PROGRAM DESIGNED TO DEVELOP NEW IDEAS, BEST PRACTICES AND PERTINENT DATA RELATED TO COST-OF-CARE DISCUSSIONS. PROGRAM COMPONENTS HAVE INCLUDED A POLICY CONSORTIUM, COST OF CARE CONVERSATION TOOLKIT, VIDEOS, WEBINARS, FOCUS GROUPS AND VIRTUAL CONVENINGS. FINDINGS FROM OUR PROJECT ARE PRESENTED ON A SPECIAL SECTION OF NPAF'S WEBSITE AND HAVE PUBLISHED IN JOURNAL ARTICLES AND PRESENTED AT EXTERNAL CONFERENCES.

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