This document discusses the challenges in defining and measuring value in oncology from different stakeholder perspectives. It notes that value has multiple definitions and is measured differently by various frameworks. Research indicates patients define value more in personal terms like relationships with providers rather than financial metrics. The document calls for the development of dynamic patient-facing value tools that capture individual patient preferences and goals over time to better inform personalized care.

1. How Can the Medical Community
Help to Define Value From the
Patient Perspective?
Robert W. Carlson, M.D.
Chief Executive Officer
NCCN

2. Value in Oncology
• Multiple definitions
• Multiple stakeholders/perspectives
• Multiple methods of measuring
• Multiple different purposes

3. Merriam-Webster definition of “value”
1. A fair return or equivalent in goods, services,
or money for something exchanged
2. The monetary worth of something
3. Relative worth, utility, or importance
4. A numerical quantity that is assigned or is
determined by calculation or measurement
5. Something (as a principle or quality)
intrinsically valuable or desirable
6. Plus others!

4. Representative Professional Value
Systems in Oncology
• ASCO Value Framework with Net Health
Benefit scores
• Memorial Sloan Kettering Cancer Center’s
DrugAbacus
• Institute for Clinical & Economic Review’s
Value Assessment Framework
• NCCN Guidelines® with NCCN Evidence
Blocks™

5. Representative Professional Value
Systems in Oncology
ASCO ICER MSKCC NCCN
Tool Value
Framework
Cost/benefit
review
Drug Abacus Evidence
Blocks
Considerations Efficacy,
toxicity, ASP
Efficacy, toxicity,
cost, anticipated
uptake
Multiple Efficacy, safety,
data quality
and quantity,
affordability
Output Net Health
Benefit Score
Textual
recommendation
Acceptable
price
Provision of
information on
5 metrics
Intended
audience
Med Oncs,
Patients
Payers, Pharma Pharma,
Payers
Physicians,
Patients
Patient
friendly?
No No No No

6. NCCN Efforts to Expose Value
• Guidelines
• Categories of Evidence
– Level of data
– Degree of consensus
• Evidence blocks
– Efficacy, safety, data quality/quantity, data
consistency, affordability
• Categories of preference
WE STILL DON’T HAVE IT “RIGHT!”

7. Value From the Patient Perspective
• Value should be defined with the patient in
the center.
• Patients define value differently and have
different needs for medical and other
support services.
• Definition of value is dynamic, and
changes during the patient experience.
Source: Winckworth-Prejsnar, et al. JNCCN 15:872, 2017.

8. NCCN Value Tools for Patients in
Cancer Care Working Group
• Multi-stakeholder working group: patients,
patient advocacy organizations, providers,
industry, pharmacists, financial
counselors, social workers, health services
researchers.
• Charged to identify gaps and needs of
current value tools.
• Develop findings and recommendations
for the evolution of value tools for patients.

9. Financial Cost is Important
• Financial toxicity is real
• Half of median income is devoted to health
care premiums and out-of-pocket
expenses
• 50% of patients do not fill or self reduce
prescriptions because of cost
• In one study, 22% of patients recalled
having cost discussion with provider.

10. Cancer Support Community
• 769 patients with metastatic breast cancer
• Asked, “When considering your cancer
experience, how would you define value?”
• Response categorized as
– Value = personal
– Value = transactional
– Other = e.g. no response
Source: Longacre, et al. Association for Value-Based Cancer Care 5th Annual Conference, 2015

11. Cancer Support Community
• 38.4% provided a Value = Personal type
response
• 7.4% provided a Value = Transactional
type response
• Of those with a health specific response
– 76% described health benefit as having a
good relationship with their provider
– 17% described health benefit in financial
terms.
Source: Longacre, et al. Association for Value-Based Cancer Care 5th Annual Conference, 2015

12. Definition of Value Tool for Patients
“A value tool for patients is a dynamic
system, process, or device that assists
patients in articulating their personal
preferences and goals with regard to their
medical condition, treatment, and related
decision-making. These tools assist patients
in communicating information to their
providers, which in turn assists providers in
delivering personalized care.”
Source: Winckworth-Prejsnar, et al. JNCCN 15:872, 2017.

13. Value Tools: Principals and
Parameters
• Allow for immediacy and timeliness of
information to the patient and of utility to
the provider
• Enable interactive and iterative dialogue
between patient and provider
• Account for differences in each patient’s
quality of life values
• Be intuitive so that extensive training is not
required.
Source: Winckworth-Prejsnar, et al. JNCCN 15:872, 2017.

14. Value Tools: Principals and
Parameters
• Empower patient’s to identify their values
and raise questions back to the provider
• Offer tool through multiple modalities
• Be sensitive to varying health literacy
levels and language
• Allow patient values to be revisited and
adaptable over time
• Include cost conversations beyond drug
and treatment costs.
Source: Winckworth-Prejsnar, et al. JNCCN 15:872, 2017.

15. Providers are confused, too!
• Interview study of 31 US medical
oncologists regarding definition,
measurement, and implementation of
value
Source: Gidwani-Marszowski, et al. Value in Health, 2018.

16. Providers are confused, too!
• Definitions of value varied
– Transactional and non-transactional
• Prioritize QOL when assessing value
• Used patient-centric view over societal
view
• Value primarily considered when high
financial burden
Source: Gidwani-Marszowski, et al. Value in Health, 2018.

17. Providers are confused, too!
• Not all thought value discussion should
happen
• Among those that thought value
discussion should happen, disagreement
about who should have the conversation
with patient.
Source: Gidwani-Marszowski, et al. Value in Health, 2018.

18. Value in Oncology: Summary
• Value has many definitions.
• Multiple systems define and measure value
differently.
• Little agreement about “value” between
stakeholder groups and within stakeholder
groups.
• We need patient facing value tools and
systems.
• Existing “value” systems should be viewed as
complementary, not competitive.