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Patient-Centered Care

WCOE: Patient-Centered Care, “The Fault in Our Stars” and Genetic Data

June 13, 2014/in Cancer News, Cancer Policy Blog Care Coordination, Care Planning, Payment Reform, Quality Cancer Care NCCS News /by actualize
What Caught Our Eye (WCOE) Each week, we take a closer look at the cancer policy articles, studies, and stories that caught our attention.
“A focus on the patient and support for continued progress needs to be part of the equation.”
Three articles caught our eye at NCCS this week.  The one that raises the most questions for us in terms of policy development is from our friend, Amy Abernathy, appearing as a blog post for the June 10th issue of The Hill. Her argument in support of patient-centered care is something we have advocated for over 20 years.  Keeping the patient at the center of cancer care is recognized as a common-sense approach to best practices, as well as a way to achieve payment reforms for oncology that reward health care providers for delivery of such care.  Dr. Abernathy’s critical point about the cost/value equation is even more compelling, as the word “innovation” is often used as a term to suggest very expensive new therapies are akin to scientific breakthroughs. In fact, the science to back up these words is often more seductive than the hoped-for benefit, not to mention the “sticker shock” from the price of many of these new therapies.  Dr. Abernathy argues, “The promise of these advances doesn’t mean we should not address cost – progress comes at a price. But it does mean that, as we work on this important issue, a focus on the patient and support for continued progress needs to be part of the equation.  Value = Quality/cost x appropriateness for the individual.” We agree with this assessment and would add that payers (Medicare and private insurers) must set standards that will cover evidence-based care that is responsive to individuals.  The use of these “targeted” therapies must not have the consequence of financial toxicity for families.  One way to help manage this difficult conversation is to equip physicians with ways to talk about cost and value.  This begs another question which is to determine if it is the role of an individual patient in the midst of making a critical decision about their care to be engaged in the value debate, or is this the role for patient advocates to tackle?

Susan Gubar continues to give us much food for thought as she contributes another in a series of Well Blogs for The New York Times.  In the June 12th blog, Susan writes about the film “The Fault in Our Stars,” a highly anticipated movie made following the enormous popularity of a young adult book of the same name.  Those of us at NCCS who read the book and now will see the movie, can only hope that this story which was so well told by author, John Green, will leave viewers with more than wet gobs of Kleenex as they leave the theater.  As Susan says, “the cast of characters in this movie speaks to all ages.”  We agree, and encourage you to read Ms. Gubar’s blog posts.

The June 10th publication of Nature draws our attention to the public/private debate over databases that contain genetic information on individuals that serve as essential elements for the future development of targeted therapies for many diseases. The importance of the accuracy of this information to inform medical decisions based on the validity of this genetic material cannot be overstated. Issues over the proprietary nature of privately held data have been debated for well over a decade.  The article points out, “In genetic testing, the size of the reference database matters: the bigger it is, the more useful it becomes for interpreting the results of any individual gene test… Only by collecting data from many different people can scientists observe the same variants often enough to make these kinds of calculations with confidence.”  This doesn’t clear up the confusion over recent rulings in court cases dealing with whose genes are these, but it raises the larger questions regarding data sharing where full cooperation among companies is encouraged.

Post by Ellen Stovall.
Tags: Cancer Survivorship, care planning, ePatient, genetic testing, payment reform, quality, Susan Gubar, targeted therapies, What Caught Our Eye
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NCCS, Cancer Groups Urge CMS to Withdraw Most Favored Nation (MFN) Medicare Part B Rule That Will Harm Patients and Reduce Access to Care

December 22, 2020
The National Coalition for Cancer Survivorship (NCCS) joined other member organizations…
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NCCS Letter to HHS

NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients

December 9, 2020
The National Coalition for Cancer Survivorship (NCCS) recently submitted comments…
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NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

December 3, 2020
The National Coalition for Cancer Survivorship (NCCS) opposes the Most Favored Nation…
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  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • COVID-19 Resources for Cancer Survivors
    • Order Our Resources
  • News
    • Cancer Convos Podcast
  • Events
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute