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Revisiting 20 Years of Advocacy and Looking Forward to the Future of Cancer Care in This Series from the NCCS Cancer Policy Matters Blog


Introduction

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 Read the 20 Years Later Posts

20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 1

Announcing a New Blog Series: “The Imperatives for Quality Cancer Care” 20 Years Later

In 1995, NCCS published Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives), the culmination of an inclusive, community-based process. Adopted at the First National Congress on Cancer Survivorship, the Imperatives represented the community’s first look at defining quality cancer care from the patient perspective. For nearly 30 years, quality care from the patient perspective has been the core work of NCCS…

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NCCS CEO Shelley Fuld Nasso Introduces Our New Blog Series

This year, NCCS and a diverse group of guest contributors will revisit the Imperatives for Quality Cancer Care as published in 1995 and evaluate progress made to date in achieving the principles proposed and ensuring that they guide the cancer care experience. Each month, we will review and discuss one of the 12 principles.  We […]

Chronic Myelogenous Leukemia (CML) Survivor Lisa Gray Talks About Her Experiences with the Affordable Care Act

The Affordable Care Act (ACA) is making great strides in ensuring that, “People with cancer have the right to a system of universal health care in which access is not precluded because of preexisting conditions, genetic or other risks factors, or employment status.”  Post by Lisa Gray as part of the “Imperatives for Quality Cancer Care: […]

The Affordable Care Act & Cancer Survivorship (INFOGRAPHIC)

The first principle of the Imperatives for Quality Cancer Care states, “People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, or employment status.” The Affordable Care Act has impacted these issues more than any other legislation passed in the […]

The Impetus for Creating the “Imperatives for Quality Cancer Care”

The impetus for creating an issue paper entitled “Imperatives for Quality Cancer Care” (Imperatives) came from a desire for the National Coalition for Cancer Survivorship (NCCS) to have a snapshot of the state of both the art and science of quality cancer care for people diagnosed with cancer across three domains—psychosocial impacts of the diagnosis; physiological […]

Tanisha Carino

Second Anniversary of State Exchanges: Affordable Options for Cancer Patients, But the Devil Remains in the Details

Cancer Policy Matters Guest Post by Tanisha Carino, Executive Vice President, Avalere Health Just one year after the launch of the state exchanges, we have seen a remarkable drop in the number of Americans without health insurance. By the end of 2015, Avalere projects 10.5 million people will be enrolled in the exchanges, which will […]

The Genetic Information Nondiscrimination Act (GINA)

This post is part of a special blog series: “The Imperatives for Quality Cancer Care: 20 Years Later.” Read more from this series. The first imperative states, “People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 2

Revisiting the Second Principle of the Imperatives for Quality Cancer Care—Treating the Whole Person

This principle was identified 20 years ago as cancer care was disease-centered and often did not include the values of the individual. This month, we will consider three components of treating the whole person: Psychosocial care, shared decision-making, and early integration of palliative care…

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Treating the Whole Person: Understanding and Gaining Access to Palliative Care

As part of our 20 Years Later blog series, NCCS CEO Shelley Fuld Nasso discusses the difference between palliative and end-of-life care, as well as barriers to palliative care in this video. The second principle from the Imperatives for Quality Cancer Care states, “Quality cancer care should be available in a health care system whose […]

Guest Post from The Cancer Support Community: Progress Made in Addressing the Psychosocial Needs of People Diagnosed with Cancer

This guest post is part of the 2015 Cancer Policy Matters “The Imperatives for Quality Cancer Care: 20 Years Later” blog series. Although noted in the literature as early as the 1970’s, serving as the foundation for the 1982 establishment of The Wellness Community (now The Cancer Support Community) and certainly referenced in the 1995 NCCS […]

Guest Post: Palliative Care in Oncology—We’ve Come a Long Way, Baby …But Let’s Not Rest on Our Laurels

“The good physician treats the disease; the great physician treats the patient who has the disease.” -William Osler Since the creation of the National Cancer Act  in 1971, the medical establishment—and indeed our entire society—has taken up the powerful metaphor of a “war on cancer” as the approach to attacking and overcoming this dreaded disease.  This […]

Decision-Making in Cancer Care: Communication (INFOGRAPHIC)

The second principle of the Imperatives for Quality Cancer Care states, “Quality cancer care should be available in a health care system whose standards and guidelines are developed in consideration of treating the whole person with cancer. Health care plans must regard the cancer patient as an autonomous individual who has the right to be involved in decisions about […]

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Guest Post by Dr. Michael Neuss Introduces the Third Imperatives Principle: Standards of Care Should Be Driven by Quality of Care

There are a dozen principles in the National Coalition for Cancer Survivorship Imperatives for Quality Cancer Care, and both those who wrote them 20 years ago and those of us who reflect on the principles now surely realize that “Quality,” as defined in that report, is a comprehensive and holistic concept. It addresses issues including access, patient autonomy, and the technical skills of the multidisciplinary…

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Guest Post by Dr. Claire Snyder: Driving Quality Cancer Care with Patient-Reported Outcomes

Twenty years ago, the National Coalition for Cancer Survivorship’s Imperatives for Quality Cancer Care advocated that “standards of cancer care should be driven by the quality of care.” By giving voice to the patient perspective, patient-reported outcomes (PROs) play a key role in assessing and improving the quality of care and, therefore, in setting these […]

Guest Video: Dr. Peter Ubel Talks About Values and Preference in Discussions of Costs of Care

This video post is part of the 2015 Cancer Policy Matters “The Imperatives for Quality Cancer Care: 20 Years Later” blog series. The third principle from the Imperatives for Quality Cancer Care states, “Standards of cancer care should be driven by the quality of care, not only by the cost of care, and should include participation in […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 4

NCCS CEO Shelley Fuld Nasso Introduces the Fourth Principle of the Imperatives for Quality Cancer Care (VIDEO)

This month, as part of the 20 Years Later series, we are revisiting the fourth principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability

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NCCS CEO Shelley Fuld Nasso Introduces the Fourth Principle of the Imperatives for Quality Cancer Care (VIDEO)

This month, as part of the 20 Years Later series, we are revisiting the fourth principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability. Transcript:  The fourth principle in the Imperatives for Quality Cancer Care states, “All people diagnosed with cancer should have access to and coverage for services provided by a multidisciplinary […]

Guest Post: Multidisciplinary Care Is the Hallmark of High Quality Care—So Why Doesn’t Everyone Get It?

The fourth principle in the Imperatives for Quality Cancer Care states, “All people diagnosed with cancer should have access to and coverage for services provided by a multidisciplinary team of care providers across the full continuum of care. Health care plans should be held accountable for timely referral to appropriate specialists when symptoms of cancer […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 5

Revisiting the Fifth Principle of the Imperatives for Quality Cancer Care

This month, as part of the 20 Years Later blog series, we are revisiting the fifth principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability. We will consider the components of care and assess the availability in today’s health care plans of the following…

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Guest Post: CancerCare Addresses Issues of Access to Supportive Care and the Changing Needs of Patients in the Last Twenty Years

This month, as part of the 20 Years Later blog series, we are revisiting the fifth principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability. This principle states: “People with cancer should be provided a range of benefits by all health care plans that includes primary and secondary prevention, early detection, initial […]

Guest Post: The Progress of Prevention—The Culmination of 20 Years of Advocacy

Twenty years ago NCCS defined quality cancer care to include a full spectrum of necessary services for cancer patients. These included primary and secondary prevention, early detection, initial treatment, supportive therapies to manage pain, nausea, fatigue, and infections, long-term follow-up, psychosocial services, palliative care, hospice care, and bereavement counseling.  This principle, and all of the […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle Six

NCCS CEO Shelley Fuld Nasso Introduces the Sixth Principle of the Imperatives for Quality Cancer Care

We’re revisiting 20 years of advocacy with our 20 Years Later blog series. In this video, NCCS CEO Shelley Fuld Nasso introduces the 6th principle of the Imperatives for Quality Cancer Care and discusses progress and remaining opportunities for meeting the needs of cancer patients and survivors…

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Guest Post: “Coughing and Spluttering” — NCCS Co-Founder Susie Leigh Writes About Improving Care for Long-Term Survivors

The sixth principle of the Imperatives states, “People with histories of cancer have the right to continued medical follow-up with basic standards of care that include the specific needs of long-term survivors.” NCCS has been on the forefront of incorporating care and survivorship care plans into cancer care. Providing her perspective of the history of […]

Hodgkin’s Lymphoma Survivor Dr. Greg Aune Discusses Issues in Long-Term Survivorship Care

At age 16, Greg Aune was diagnosed with Hodgkin’s Lymphoma and was successfully cured of his disease after undergoing one year of chemotherapy and radiation treatments. His cancer experience led Dr. Aune down a path to becoming a pediatric oncologist and physician scientist. In this video, Dr. Aune discusses issues of long-term survivorship care and […]

Navigating Cancer Survivorship Without a Net: How Far Have We Come and Where Are We Headed?

Diagnosed, in 1994, with stage three testicular cancer with metastases to several lymph nodes and both lungs followed by an unrelated diagnosis of kidney cancer three months later, I found myself completely unprepared for the journey I was about to embark on.   At the age of 25, while many of my friends were planning weddings, […]

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Twenty Years Later Blog Series: Introducing the Seventh Principle of the Imperatives for Quality Cancer Care

Over the last 20 years, survivorship clinics have emerged to address the needs of survivors who have completed their treatment. As more and more cancer patients are declared cancer free, many are thrust into survivorship without knowing what survivorship means or how to get through it. At the end of treatment, cancer survivors still need a unique brand of follow-up care, according to their type of cancer…

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Guest Video: Mary McCabe Discusses Survivorship Care Planning and the Delivery of Coordinated Care

At the NCCS Cancer Policy Advocate Training (CPAT) held in Washington, DC from June 24-25, Mary McCabe, RN, MN spoke to patient advocates about survivorship care planning and models for delivering survivorship care. This presentation was part of a larger panel titled, Survivorship Care Planning and the Delivery of Coordinated Care. In alignment with July’s […]

Cancer Survivorship: You’re Never Really Done

When the Imperatives of Quality Cancer Care were written by NCCS 20 years ago, one principle of quality care stated that, “Long-term survivors should have access to specialized follow-up clinics that focus on health promotion, disease prevention, rehabilitation, and identification of physiologic and psychological problems. Communication with the primary care physician must be maintained.” It […]

Guest Post: Oncologist and Cancer Survivor Greg Aune Talks Multi-Disciplinary Care

The seventh principle in the Imperatives for Quality Cancer Care states, “Long-term survivors should have access to specialized follow-up clinics that focus on health promotion, disease prevention, rehabilitation, and identification of physiologic and psychological problems. Communication with the primary care physician must be maintained.” Providing his perspective on the state of long-term survivorship care and […]

Guest Post: Developing Clinical Solutions to Improve Survivorship Care: The Value of Partnership

We are living in an exciting and dynamic time for cancer care, witnessing not only tremendous innovations in treatment that have led to a growth in survival rates, but also advances in screening and opportunities for earlier detection. In combination with an aging population, this translates into and unprecedented growth in the numbers of individuals […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 8

Twenty Years Later Blog Series: Introducing the Eighth Principle of the Imperatives for Quality Cancer Care

Over the course of 2015, NCCS and a diverse group of guest contributors will revisit the Imperatives for Quality Cancer Care as published in 1995 and evaluate progress made to date in achieving the principles proposed and ensuring that they guide the cancer care experience. The eighth principle of the Imperatives for Quality Cancer Care…

Read The Introductory Post

Guest Post by Amy Abernethy of Flatiron Health: Long-Term Medical Data Collection Improves Care Quality, Outcomes

I once had a patient named Janet. Janet was a curly redhead emergency department nurse. She was vibrant, sweet, and vivacious, had melanoma, and was passionate about her data (her “story” as she liked to call it) being used in ways that would impact the future of cancer care. But this isn’t as easy as […]

Guest Post by Dr. Melissa Hudson: How Has the Childhood Cancer Survivor Study Informed the Care of Children With Cancer?

Progress in survival for childhood malignancies is tempered by the sequelae of the cancer and its treatment. Compelling evidence supports that childhood cancer survivors are a highly vulnerable group with a substantial risk of adverse health-related and quality-of-life outcomes resulting from their curative cancer therapy, broadly called “late effects”. Observational studies of survivor health outcomes […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 9

Twenty Years Later Blog Series: Introducing the Ninth Principle of the Imperatives for Quality Cancer Care

Over the last twenty years, much progress has been made in the way we prevent, detect, treat, and monitor cancer, and survival rates have noticeably improved. However, most survivors still struggle with late and long-term effects from initial treatment and often do not know where to go for help. The ninth principle of the Imperatives calls on families, oncology providers, and primary care providers to help relieve these burdens from the survivor…

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Caring for Cancer Survivors: A Primary Care Physician’s Perspective on the Last Twenty Years and the Road Ahead

Over the past twenty years, the number of cancer survivors has grown substantially.  Survivors are also living longer, getting older, and have numerous medical conditions that require attention.  While survivors typically receive general medical care in primary care settings, the role of primary care providers (PCPs) in the long-term follow up of survivorship needs is […]

Guest Post by Dr. Patricia Ganz: What Cancer Patients and Their Families Can Do to Coordinate Post-Treatment Care

Twenty years later, the 9th Principle of the NCCS Imperatives for Quality Cancer Care could not be more relevant. Increasingly, patients are required to take more responsibility for their health, using knowledge and self-monitoring tools that have become an essential part of medical care, such as monitoring of blood pressure, physical activity, and weight-—to name […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 10

Twenty Years Later Blog Series: Introducing the Tenth Principle of the Imperatives for Quality Cancer Care

Twenty years ago, authors of the Imperatives warned that “psychosocial care may be seen as an adjunct, ‘value-added’ rather than an essential.” Advocates then called for increased funding of research on the psychosocial effects of a cancer diagnosis and on how the cancer care system can help survivors and families address common…

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Guest Post by Elizabeth J. Clark: Self-Advocacy is Critical to Quality Cancer Care

  In the past twenty years, many advances have been made in ensuring quality cancer care for persons living with cancer. Individuals now have better treatments, more options, more cures, and longer periods when they are cancer-free or in remission. Enhanced insurance coverage, especially the passage of the Affordable Care Act, has contributed to innovative programming in survivorship and […]

Guest Post by Diane Blum: Developing the Systems to Meet the Psychosocial Needs as Part of Comprehensive Cancer Care

  Twenty years later, the 10th principle of the NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives), is as critical and significant as it was in 1995. When it was written, it followed years of psychosocial research that demonstrated that cancer created an emotional crisis for patients and families. It […]

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Dr. Julia Rowland Discusses the Importance of Psychosocial Care: Engagement and Dialogue

This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability(Imperatives). The eleventh principle states that “Psychosocial research is integral to comprehensive cancer care and, as such, psychosocial outcome measures should be included in all future clinical […]

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20 Years Later Blog Series: The Imperatives for Quality Cancer Care Principle 12

Guest Video: Meghan Gutierrez of LRF Discusses Progress in Lymphoma Treatment and Advocacy

This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and […]

20 Years Later Series Wrap-Up: Julia Rowland Shares a History of the Imperatives and the Current Challenges in Survivorship

This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and […]

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