C-- TACAt-- A- -Glance
The Challenge of Advanced Illness Care Today
Most Americans today are living longer and healthier lives than ever before. Yet, at some point, the vast
majority will face advanced illness, which occurs when one or more conditions become serious enough
that general health and functioning decline, curative treatment begins to lose its effect, and quality of
life increasingly becomes the focus of care - a process that continues to the end of life. These people
need and want seamless, person-centered and well-coordinated care that helps them live as comfortably
and productively as possible. Our health care system, despite its strengths, is ill equipped to provide
such care when people are seriously ill. This is not a problem that can be ignored. Over the next two
decades, the number of people over 65 will nearly double to more than 72 million, or one in five
Americans. Most people with advanced illness will be in this age group. Without change, they will be
at higher risk for unnecessary hospitalizations, unwanted treatment, adverse drug reactions and
conflicting medical advice, with resulting higher cost-of-care to families and the nation. It doesn’t have
to be this way.
Our Guiding Principle
The Coalition to Transform Advanced Care (C-TAC) is dedicated to the idea that all Americans with
advanced illness, especially the sickest and most vulnerable, receive comprehensive, high-quality,
person- and family-centered care that is consistent with their goals and values and honors their
dignity. We will achieve this goal by empowering consumers, changing the health delivery system,
improving public and private policies, and enhancing provider capacity.
How C-TAC Drives Change
As a large and growing alliance of over 120 national organizations and leaders, C-TAC creates, supports
and promotes the use of proven solutions to drive positive change in advanced illness care. We see our
role as a catalyst and voice for this expanding movement across America.
C-TAC is a non-profit, non-partisan 501(c)3 organization based in Washington, D.C. Members include:
patient and consumer groups; health care professionals and providers; private sector stakeholders; faithbased organizations; and health care payers.
Our Priorities
Using our guiding principles, we work with and among our members and others across four integrated
focus areas: policy and advocacy; public engagement; clinical and community models; and professional
engagement. Among our priority programs are:
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HealthDeliverySystemandCommunityInnovation
!! Advanced Care Project (ACP)
In partnership with the AHIP Foundation, C-TAC and a number of health systems and other
stakeholders have identified and compared best practice clinical models drawn from leading
programs across the U.S. and produced five guiding principles for an effective advanced care model.
The goal is to disseminate these principles as a useful guide to boost quality, support choice and
increase affordability of care.
The next step is to promote the results of this work to make “the right way the easy way” for
hospitals, health systems, physician groups, and health plans, as well as nursing homes, hospices,
and community-based organizations in order to provide high quality care for patients and families
living with advanced illness. Payment models and quality measurement are also being developed to
enable successful implementation of advanced care programs. This implementation phase is now
underway. For more information on the ACP, contact Jon Broyles (jbroyles@thectac.org).
!! Community Action Models
Our alliance of faith organizations, health systems and other stakeholders are piloting replicable
community-based models to connect community services and clinical care to improve outcomes for
people with advanced illness, reduce caregiver burdens and reinforce community support. The
initial pilot is underway in Alameda County, CA. Training and workshops for clergy and others are
part of this effort, and a toolkit for community outreach is under development. Additional pilots are
being initiated in Detroit and Washington, D.C.
These initiatives – clinical interventions connected with community and social support – are
designed to improve person- and family-centered decision-making regarding advanced illness. To
support this, a study with The Advisory Board Company was undertaken to establish a baseline
understanding of how care and treatment decisions among clinicians, patients and families are made,
and how informed and shared decision-making can be improved.
Public Engagement
!! CareJourney
Patients and their families and caregivers crave information about serious illness, whenever it
occurs. Today’s health system is often difficult to navigate, and people are forced to search a
confusing and overwhelming array of sources to get the information they need. To fill that void, CTAC developed CareJourney – a consumer-based website aimed at helping patients and their
caregivers understand their diagnoses, what they mean for the future, and how to plan for their care
and caregiving – medical, financial and spiritual. This website has been launched and is now being
refined. Visit www.carejourney.org for additional information.
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!! ChangingtheNarrative
To achieve necessary change in advanced illness care, we need a new way to talk about it—a new
conversation, essentially a new way to tell the story. To change outcomes among families, clinicians
and others, we need to change the narrative into one that empowers solutions and action. C-TAC
produced “A New Narrative for Advanced Illness Care” to address this need. For more information
on the narrative, contact Meagan Johnston at mjohnston@thectac.org.
PolicyDevelopmentandAdvocacy
!! Policy Agenda
C-TAC developed a Policy Framework that describes the barriers in current law to higher-quality
advanced illness care delivery and the issues that must be addressed in order to overcome those
barriers, including: advance care planning, health information technology, consumer education and
caregiver support, professional education, quality measurement, payment reform, and research. In
addition, we have developed an Advanced Illness Policy Review, providing an in-depth look at the
specific federal policy measures introduced and considered in the past decade. Now, we have taken
the next step and built a comprehensive Policy Agenda to help guide federal and state advocacy
initiatives across the country. This agenda includes delivery system reform, preference-driven care,
caregiver and consumer support, and professional engagement.
We work closely – in a bipartisan fashion – with Members of Congress and staff, Administration
officials and key stakeholder groups to advance the Coalition's short and long-term priorities. We
have also established a policy task force or "SWAT Team" of member organizations and others,
dedicated to engaging policymakers on our Policy Agenda. For more information about the SWAT
Team, please visit www.thectac.org. Please direct any inquiries to Andrew MacPherson at
amacpherson@thectac.org.
ProgressAcrosstheMovement
!! Performance Measurement
A full array of measures is needed to gauge progress, on a national basis, in improving advanced
illness care, including care utilization and quality, patient and family satisfaction, cost of care and
other components. C-TAC is working with the National Quality Forum and others to establish and
promulgate these standards.
In addition, a consumer baseline is needed to assess progress and effectiveness in public
engagement. This involves understanding public knowledge, perceptions, and reported behaviors
regarding these issues. C-TAC is actively seeking funding to conduct this baseline research.
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!! Institute of Medicine Report
In September 2014, the Institute of Medicine (IOM) released its first report and recommendations in
17 years on advanced illness/end of life issues in America. Dying in America: Improving Quality
and Honoring Individual Preferences Near the End of Life marked a critical milestone in the
evolution of how we care for the sickest and most vulnerable people in this country. C-TAC is
promoting the IOM report’s findings and is advocating for the adoption of the report’s
recommendations. Victor Dzau, MD, President of the IOM, highlighted the report at C-TAC’s 2015
National Summit on Advanced Illness Care. We will continue to work with IOM in support of this
important document. To access the IOM report, go to www.iom.edu.
!! A Blueprint for Transforming Advanced Illness Care in America
A Roadmap for Success: Transforming Advanced Illness Care in America, is a new book that:
provides an understanding of the key issues, challenges, and solutions needed for reform; builds on
the shared mission in the national movement for change; identifies action steps for achieving highquality, advanced illness care; and, provides a call to action. It is directed towards the professional
community: clinicians, health executives, health care companies, policy analysts, policy makers,
faith leaders, academics and other thought leaders. Authors of A Roadmap for Success are experts
from C-TAC’s member organizations. A pre-production copy was distributed at the 2015 National
Summit and final copies are now available as a free online download and in printed form. For
further information or your own copy, contact Meagan Johnston at mjohnston@thectac.org.
!! 2015 National Summit
C-TAC’s second National Summit on Advanced Illness Care took place on March 2-3, 2015, at the
National Academy of Sciences in Washington, D.C. The 2015 Summit focused on: evidence-based
solutions and metrics for person-centered advanced illness care; policy reform, public engagement
and shared and informed decision-making; research priorities; and the value of comparative
effectiveness research and strategies to close critical gaps in the evidence base. The third National
Summit on Advanced Illness Care will take place September 20-21, 2016 in Washington, D.C., in
conjunction with C-TAC’s member meeting. For further information, contact Jackie Buente at
jbuente@thectac.org.
Follow Up with C-TAC
C-TAC is a non-profit, non-partisan organization governed by a Board of Directors, Co-Chaired by Tom
Koutsoumpas, President and CEO, National Partnership for Hospice Innovation, and Bill Novelli.
Founder of the Global Social Enterprise Initiative at Georgetown University’s McDonough School of
Business, and former CEO of AARP. C-TAC’s Executive Director is Jon Broyles and funding is
provided by member organizations, foundations, and government grants. To join C-TAC and for further
information, please contact Emma Jellen, Membership Manager, at EJellen@thectac.org and/or visit
www.thectac.org. To discuss any of the issues and topics above, please contact Michele Kimball,
Director, External Relations, at mhkimball@thectac.org or 651-955-8878.
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