Value Frameworks in Cancer Care - a Patient Perspective

Value Frameworks in Cancer Care:
Janet Freeman-Daily, MS, Eng
grayconnections.net
@JFreemanDaily
A Patient Perspective

Hastings Center Goals of Medicine
1. Prevention of disease and injury
and the promotion and maintenance of health
2. Relief of pain and suffering caused by maladies
3. Care and cure of those with a malady
and the care of those who cannot be cured
4. Avoidance of premature death and
the pursuit of a peaceful death
Hanson MJ, Callahan D, eds. The Goals of Medicine: The Forgotten Issues in Health Care Reform. Washington,
DC: Georgetown University Press; 1999:ix.
Janet Freeman-Daily @JFreemanDaily

Disclosure:
I’m a cancer
patient on a
targeted
therapy
photo credit: LUNGevity, 2015

4
photo credit: LUNGevity, 2016
10+ years after
lung cancer
diagnosis

5
photo credit: Bonnie J Addario
Lung Cancer Foundation, James
Hall Photography. 2015.

Incremental Benefit Is Worth It
photo credits: University of Colorado Cancer Center

Institute of Medicine Definition of
“Values”
a patient’s concerns, expectations, and
choices regarding health care, based on a full
and accurate understanding of care options
Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. 2013

ASCO Criteria for High-Quality
Clinical Pathways in Oncology
What’s missing?
PATIENT-DEFINED VALUE

Avalere-FasterCures Review of Value Frameworks
http://go.avalere.com/acton/attachment/12909/f-02b9/1/-/-/-/-/value-coverage-framework-March-2016.pdf

Five Domains of Patient-Perspective Value Framework
http://go.avalere.com/acton/attachment/12909/f-047c/1/-/-/-/-/20150510_PPVF%20Infographic_Print%20Friendly.pdf © 2017 Avalare Health LLC

http://go.avalere.com/acton/attachment/12909/f-047c/1/-/-/-/-/20150510_PPVF%20Infographic_Print%20Friendly.pdf

Definitions of Value Among a Sample of Cancer Survivors
Buzaglo JS, Longacre ML, Miller M, Charap ES. (2016) Definitions of value among a diverse sample of cancer survivors: Differences according to
sociodemographics. Poster presented at Association for Value-Based Cancer Care, 6th Annual Conference, Washington, DC.

Cancer
Patient
Priorities
When
Considering
a Treatment
Decision
Buzaglo JS, Miller MF, Longacre ML. (2016) Cancer Patients’ Priorities When Considering a Treatment Decision. Poster presentation at 8th Biennial Cancer
Survivorship Research Conference.

Patients Place
Different Values
on Different
Types of Side
Effects
Bridges JFP, Jannsen EM. Project Transform: Incorporating the patient experience into lung cancer treatment, research, and policy, Presentation at
LUNGevity National HOPE Summit 2017.

Institute of Medicine
“The cancer care team should collaborate
with their patients to develop a care plan
that reflects their patients’ needs, values,
and preferences, and considers palliative
care needs and psychosocial support
across the cancer care continuum.”
Delivering high quality cancer care: charting a new course for a system in crisis. 2013.

Cancer
patients
want their
clinician to
tell them
the full
truth and
offer
options
Institute of Medicine. (2013). Delivering high-quality cancer care: Charting a new course for a system in crisis. National Academy of Sciences.

AHRQ
SHARE
Approach
https://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/index.html

Many lung cancer patients desire
shared decision making (SDM)
• 60% faced a difficult decision
• 73% desired SDM with doctor
• They often feel they have insufficient information
• 55% believed they experienced SDM
• They perceive need for improvements in decision
process, possibly with patient decision aids
Gaspar LE, West HJ, Addario BJ, Camidge DR. Shared decision making (SDM) and patient decision aids (PDAs) in lung cancer: A
survey of patients, significant others or caregivers. 17th World Conference on Lung Cancer, Dec 2016.

Majority of patients don’t understand
intent or likely outcomes of treatment
• Only 5% had completely accurate illness understanding
(knew they were terminally ill, had incurable of advanced stage cancer, were expected to live
months instead of years)
• 80% of incurable patients receiving chemotherapy believe that
chemotherapy is being administered to cure them
• 72% patients say they would want their doctor to discuss their
prognosis with them if they knew it, but only 17% report being told
• Epstein AS, Prigerson HG, EilO’Reilly EM, Maciejewski PK. Discussions of Life Expectancy and Changes in Illness Understanding in Patients With Advanced
Cancer. J Clin Oncol 2016 34:20, 2398-2403.
• Enzinger AC, Zhang B, Schrag D, Prigerson HG. Outcomes of Prognostic Disclosure: Associations With Prognostic Understanding, Distress, and Relationship With
Physician Among Patients With Advanced Cancer. J Clin Oncol 2015 33:32, 3809-3816

The Conversation Project website. http://theconversationproject.org/

Goals of Care Discussions Add Value
• For patients facing serious and life-threatening illness, early
GoC discussions are associated with improved patient
outcomes
• better quality of life
• reduced use of nonbeneficial medical care near death
• enhanced goal-consistent care
• positive family outcomes
• reduced costs
• Did not increase pt anxiety, depression, and/or hopelessness
Bernacki RE, Block SD, for the American College of Physicians High Value Care Task Force. Communication About Serious Illness Care GoalsA
Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174(12):1994-2003. doi:10.1001/jamainternmed.2014.5271

Goals of Care Discussions Add Value
• For patients facing serious and life-threatening illness, early
GoC discussions are associated with improved patient
outcomes
• better quality of life
• reduced use of nonbeneficial medical care near death
• enhanced goal-consistent care
• positive family outcomes
• reduced costs
• Did not increase pt anxiety, depression, and/or hopelessness
Bernacki RE, Block SD, for the American College of Physicians High Value Care Task Force. Communication About Serious Illness Care GoalsA
Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174(12):1994-2003. doi:10.1001/jamainternmed.2014.5271
REDUCED USE
OF AGGRESSIVE
INTERVENTIONS
REDUCED
COSTS

Hutchinson Institute for Cancer Outcomes Research. Goals of Care for Cancer Patients. Poster at 2017 HICOR Value in Cancer Care Summit.

• The majority of clinics surveyed did not have a standard policy
for how frequently Goals of Care conversations should occur with
advanced disease patients (12/14 clinics)
• The majority of clinics surveyed had no conversation aid or tool
available to providers or patients (9/14 clinics)
• The majority of clinics surveyed, but not all, did have access to a
palliative care specialist on staff or by referral (11/14 clinics)
2016 Washington State
Oncology Delivery Systems Survey

Institute of Medicine. (2013). Delivering high quality cancer care: charting a new course for a system in crisis.

VItalTalk offers resources for physicians, including
suggested questions for goals of care discussions
http://vitaltalk.org/resources/

https://www.ariadnelabs.org/areas-of-work/serious-illness-care/
Ariadne Labs offers
resources on
serious illness care

http://theconversationproject.org/
“The Conversation Project
emphasizes having a
conversation on values —
what matters to you, not
what‘s the matter with you.”
Ellen Goodman,
Co-Founder & Director

Conclusions
• Current value frameworks for cancer do not include
patient-defined value
• Patient-defined value is essential part of shared
decision making and cost-effective treatment choices
• Goals of care discussions can help capture patient’s
values and preferences and reduce costs

Acknowledgements
• Bonnie J. Addario Lung Cancer Foundation
• D Ross Camidge, MD, PhD, University of Colorado
• Cancer Support Community
• FasterCures and Alvare
• LUNGevity Foundation and their Project TRANSFORM
• Andrea Borondy Kitts, MPH, lung cancer patient advocate
• John F. P. Bridges, PhD, and Ellen M. Janssen, PhD, Johns Hopkins University
• Laurie Gaspar, MD, MBA, University of Colorado
• Holly Prigerson, PhD, Weill Cornell Medical College
• Casey Quinlan, engaged patient, Mighty Casey Media
• Hutchinson Institute for Cancer Outcomes Research (HICOR)
• Ariadne Labs
• The Conversation Project
• VitalTalk
• The online network of patients and disease advocacy organizations

Value Frameworks in Cancer Care - a Patient Perspective

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