Patients, Advocates

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Patients, Advocates Researchers Partners
in Progress

• Paula Kim , TRAC- Translating Research Across
  Communities
• Biobank Ireland- Molecular Medicine Ireland
• Biobank Networks, Cancer Research and Better
  Global Cancer Care
• April 9 2008, Croke Park Conference Center,
  Dublin, Ireland

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Across The Scientific Spectrum
Physical Behavioral Social Cultural Economic Poli
tical Spiritual Technological
HOPE
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HOPE
May 2007, Zagreb, Croatia- 1st Croatian Advocacy
Workshop
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The Art of Translation

• From the standpoint of medicine as an art for
  the preparation and cure of disease, the man who
  translates the hieroglyphics of science into the
  plain language of healing is certainly more
  useful.
• -William Osler, Physician

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Advocacy Overview

• Patient Education Services Support
• Research Scientific Committees
• Public Policy/Advocacy for Funding
• Direct Research Funding
• All Sizes and Shapes

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Research Advocacy Examples

• Scientific committees
• Clinical trial design
• IRB Data Safety Monitoring Board
• Grant Review
• Word of Mouth
• Bring The Patient Perspective

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Snapshot of U.S. Cancer Advocacy Growth
PUBLIC
PRIVATE
1949 The Leukemia Lymphoma Society 1970s
Candlelighters Y-ME National Breast Cancer
Organization 1980s Susan G. Komen Breast Cancer
Foundation NCCS- National Coalition
for Cancer Survivorship NABCO- National
Alliance of Breast Cancer Organizations
NCCR-National Coalition for Cancer
Research 1990s NBCC- National Breast Cancer
Coalition US TOO International NABTC North
American Brain Tumor Coalition NKCA- National
Kidney Cancer Association LRFA- Lymphoma
Research Foundation Association CapCURE
CFL-Cure for Lymphoma IMF International Myeloma
Foundation The Melanoma Research Foundation
PAIR-Patient Advocates in Research MMRF-Multiple
Myeloma Research Foundation Childrens Cause
CCN- Colorectal Cancer Network CCA- Colorectal
Cancer Alliance NPAF-National Patient Advocate
Foundation OCNA-Ovarian Cancer National
Alliance ALCASE-Alliance for Lung Cancer,
LAF-Lance Armstrong Foundation Friends of Cancer
Research, National Pancreas Foundation,
Lustgarten Foundation 1999 PanCAN-Pancreatic
Cancer Action Network 2000-03 OVAC-One Voice
Against Cancer C-3 2007 National Melanoma
Alliance

• 1971 National Cancer Act
• 1990s Dept of Defense, NCI, Cooperative Groups
• 1995 FDA Patient Advisory
• 1997 NCI Liaison Activities
• NCI Directors Consumers Liaison Group

Source Paula Kim, National Coalition for Cancer
Survivorship, PAIR PanCAN
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C nnect The D ts
Patients, Volunteers, Groups Public

Academic Community
Public Agencies Policy Makers
B
Industry Private Sector
B Biospecimen
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Patient Dilemma with Words and Decisions
Personalized medicine? Targeted Therapies?
Angiogenesis Inhibitor? Proteomics? Donate
tissue?
Invasive ? Non-invasive? Academic Center ?
Local ? Informed Consent? How to pick
treatment? Clinical Trial or not? Eligible ?
Insurance ? Am I Going to Live?
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Understanding The Other Teams Understanding
Depends on Knowledge

• Joist
• Fascia
• 200 psi
• 4 in 12
• 20/30 finish
• Romex
• Title 24
• Combi
• TJI

• OK to carry a live load of 100 lbs PSF?
• Do you nail drywall at 6 o.c. or 12 o.c?
• Does the concrete cure for 28 or 40 days?
• Imagine making choices and decisions that affect
  our liveswithout access to guidance,
  information, and resources ?
• Imagine trying to build your dream house without
  well designed plans and standards or a qualified
  architect or builder ..

• COMMUNICATION, UNDERSTANDING, AND EXPECTATIONS
  ARE CRUCIAL WHETHER ITS A HOUSE OR RESEARCH !

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The Promise

• Personal Targeted Therapies
• Seek and Control instead of Search and Destroy
• Genetic Testing
• Reduced Toxicities
• Predictive/Preventive Capability
• Reduced drug failure rates
• A CURE

Hype or Not?
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POSITIVE MESSAGE ?
OR MIXED MESSAGE ?
NEGATIVE MESSAGE ?
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Treatment Decision Making Outside Sources of
Info for Patients
Source TRAC Perspectives on Costs of Cancer Care
Survey-2006
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Needs and Issues Europe and Asia Advocacy
Feedback

• Better Communication
• Access to Information
• Patient Information and Support
• Greater Awareness
• Resources and access to treatment
• Support services
• Palliative Care

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Importance of Partnering

• Many unmet needs exist
• Every patient is unique
• Lots of information available
• Information Is Not Knowledge
• Increased Regulations
• Fast Moving Science
• Requirements and Expectations

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Ireland Partnership Example of Unmet Need

• UPMC Whitfield Cancer Centre is the first private
  facility to sign an agreement with Irelands
  Health Service Executive to provide radiotherapy
  for cancer patients who do not have private
  health insurance.
• UPMC Whitfield and Beacon Cancer Centre opened in
  Fall 2006, are radiation oncology facilities
  located in Waterford and Dublin, Ireland,
  respectively.
• The centers bring the expertise and cutting-edge
  technology of UPMC Cancer Centers most advanced
  cancer diagnostic and treatment services to
  populations whose access to these services
  historically has been limited.

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What You Gain

• Communication and Outreach
• Leverage multi-sector activities
• Visibility and awareness
• Develop relationships and trust
• Gain understanding
• Increase effectiveness and efficiency
• Broaden reach and depth

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TRAC Initiative Example of Core
Strategies
and Programs Across Sectors
OUTREACH COMMUNICATION
EDUCATION TRAINING
PUBLIC PRIVATE COLLABORATION
PUBLIC POLICY AWARENESS EDUCATION
Patients Public Policy Makers Researchers
Clinicians Industry Agencies Payers
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100 Years and Counting

• Taken over a century, and now biospecimens,
  technology, and science for patient benefit is
  coming of age
• Biospecimens are precious human resources filled
  with unique genetic information
• The privilege of using biospecimens to advance
  research into clinical application brings great
  responsibility not to be taken lightly
• Biospecimens are part of resource toolkit

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Examples of Novel Biospecimen Efforts
Partners In Progress

• Mesothelioma Virtual Tissue Bank - CDC
• On Core UK-Patient Community
• Total Cancer Care Moffitt Cancer Center
• UNMC Pancreas Rapid Autopsy - Academic
• Genetic Alliance Broad Based
• Multiple Myeloma Research Consortium

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RISK BENEFIT
ADVANCE PUBLIC HEALTH

• State Law
• Common Rule
• Common Sense
• Risk
• Complication
• Appropriate
• No participation
• No research
• No answers
• No hope

• Federal Law
• HIPAA IRB
• Black Letter Law
• Benefit
• Simplification
• Misuse
• No patient uptake
• No biospecimens
• No progress
• No cures 

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Why We Need To Keep Moving In the Right Direction

• Information is not knowledge
• Competing Priorities
• More Survivors Still Feared
• Shrinking Budgets- Expanding Costs
• Increased Regulations
• Fast Moving Science
• Requirements and Expectations

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Consequences of Poor Practices- ?

• False and False -
• Inaccuracy non-reproducibility
• Erodes public confidence
• Wastes time money
• Impedes clinical benefit
• Takes another 100 Years

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Biospecimen Best Practices Are More Than Just
Freezer Temperature and Hold Time

• Partnering with the public and community
• Privacy and patient protection, cultural
  sensitivity
• Data Sharing and bioinformatics
• Handling of biospecimens
• SHARE, promote and provide research access
• Balancing Intellectual property
• Patient treatment and profile resource
• Special populations- Ethnic, age specific,
  gender, familial syndromes

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Earn Public Trust Confidence

• Confidence in you and your team
• Confidence in the reason
• Confidence in the test
• Confidence in the system
• Confidence in the procedure
• Confidence in the test results
• Confidence in the diagnosis
• Confidence in the recommendation
• Confidence in the outcome
• Confidenceperiod

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Resources and Examples

• National Cancer Institute
• http//biospecimens.cancer.gov/index.asp
• Virtual Tissue Bank
• http//www.mesotissue.org/

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Benefits for All

• Commitment for
• Infrastructure resources best practices
• can yield high-quality annotated biospecimens
• The Potential Upside ?
• Data specimen with integrity becomes
• Information into knowledge that puts real
• discovery into real life in real time for
• patient benefit

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Why We Must Get This Right

• We must harness the scientific, industrial, and
  social will to accelerate discoveries into
  accessible and meaningful clinical applications.
  Patients, families, friends, and loved one are
  counting on usBecause in the end, its not about
  you, or me, or the science, its about the
  patient.
• Paula Kim - Research Patient Advocate

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Patient Advocate Perspectives
Dont Leave Home Without Them
www.tracnetwork.net Paula Kim [phone]