Advocates Participate in
NCI’s caBIG Initiative
In 2004, the National Cancer
Institute’s (NCI) Center for Bioinformatics launched an initiative aimed at
connecting individuals, researchers, and institutions to promote the sharing of
information, tools and resources related to cancer research. Called the cancer
Biomedical Informatics Grid – or caBIG – this voluntary virtual network has
collaborated to create a “world wide web” of cancer research, with the goal of
speeding the delivery of innovative approaches for the prevention and treatment
of cancer.
Ultimately, the caBIG initiative
will develop a grid that will facilitate the successful sharing of specimens
and data, leading to more rapid translation of basic research to improve cancer
care. caBIG believes that by linking the scientists and organizations at the
forefront of critical research, it will be possible to support the NCI’s goal
of eliminating death and suffering due to cancer by 2015.
From its inception, caBIG has
worked to aid advances in research by breaking down the technical and
collaborative barriers within the cancer community that prevent
inter-disciplinary communication and partnership. Based on this approach, the
initiative has identified the guiding principles of open source, open access,
open development, and federation, involving 50 NCI-designated cancer centers,
more than 800 individuals, and over 80 volunteer organizations. Patient
advocates have been involved in all aspects of the caBIG project since its
beginning, and they have focused on ensuring that the initiative’s end product,
“The Grid,” will ultimately benefit patient treatment and outcomes in the most
effective and timely way possible.
To this end, caBIG is working
toward implementing common standards and
software architecture to promote the delivery of open access and inter-operable
tools, thus creating an infrastructure that allows for the sharing of data. The
initiative has also focused on developing high-tech solutions to enhance
collaboration in five key aspects of cancer research:
- clinical trial management
systems,
- integrative cancer
research,
- tissue banks and pathology
tools,
- vocabularies,
- common data elements.
As a result of this work,
the entire caBIG
community – along with other cancer and biomedical researchers – is able to
share applications, resources, and data sets.
Beyond these tools and
data-driven resources, caBIG is also delivering a breadth of products such as:
- OMB (Office of
Management and Budget)-derived Race and Ethnicity Standards,
- Candidate
caBIG
Data Standards,
- caBIG
Compatibility
Guidelines,
- project-specific
white papers,
- development
models,
- end user
materials
for training and documentation.
In addition, the
initiative has created educational materials and template agreements relating
to open source software licensing, publications, and other proprietary issues. All
products, as they are completed, are available on the caBIG web site at http://caBIG.nci.nih.gov.
Patient advocates who are
interested in caBIG can volunteer to participate in the project, or can check
on the progress of the initiative and share their input by contacting the
advocates already involved. For more information on the caBIG initiative,
please visit https://cabig.nci.nih.gov/.
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Paying for
Physicians’ Performance: A New
Approach to
Healthcare
As the advocate community is well
aware, many patients do not have access to quality healthcare, regardless of
whether they are receiving treatment through community physicians, large HMOs,
or independent hospitals. The lack of consistency among treating physicians has
created a healthcare system with huge variability in the medical care that
patients receive, ultimately impacting patient outcomes. And when paired with
the skyrocketing costs of healthcare, it is clear that the entire system is in
crisis.
In an effort to improve
healthcare delivery and patient outcomes across the board, different
stakeholders are coming together to discuss strategies for increasing quality. At
the heart of these discussions is the concept of paying physicians based on
their performance and the quality of care of that their patients receive.
Recent pay-for-performance
meetings have included healthcare purchasers who want reduced costs, private
and government payers who seek improved value and increased affordability, and
non-profit organizations who want accountability among physicians. Some of
these key players include the Leapfrog Group, which represents major healthcare
purchasers such as AT&T, IBM, Marriott, GM, and many others; payers such as
Blue Shield Blue Cross and the Centers for Medicaid and Medicare Services
(CMS); and the National Quality Forum, a non-profit organization that was
created to develop and implement a strategy to improve the delivery and
reporting of quality healthcare.
Each of these stakeholders plays
a key role in the discussions, helping to ensure that patient care isn’t
sacrificed in order to cut healthcare costs. Therefore, the proposed
pay-for-performance system is built around disease management principles, in order
to identify symptoms more quickly, correctly diagnose and treat patients, so
that they move through the system from sick to well and have a better shot at
remaining healthy.
But in order to evaluate the
system’s effectiveness, patient outcomes must be clearly and consistently
recorded so that clinical evidence can be gathered on high quality,
cost-reducing approaches. These results must also be publicly reported so that
patient care isn’t short-changed, and so that improved treatment methods can be
accepted and routinely used by physicians.
As the pay-for-performance system
begins to broadly establish agreed-upon quality indicators for chronic diseases
and acute conditions, it is possible that the physician community will resist
these changes. Currently, CMS is planning to reduce payment to individual
physicians by 1% over the next year, when their patient outcomes fall below
accepted quality indicators. And that figure is set to increase to 2% within
five years, with CMS re-distributing that 2% of payments to the highest
achieving physicians as a reward for providing high-quality care to their
patients.
Already it is possible to foresee
debates on the merits and drawbacks of a healthcare system that compensates and
penalizes physicians based on their performance. However, it also offers hope
that patients will begin to receive better care on a consistent basis,
regardless of the type of insurance coverage they have. Because of this, it
will be a tricky balance to develop a fair system that improves patient
outcomes while rewarding physicians and cutting costs. With so much at stake,
it is important for patient advocates to have a seat at the table as quality
indicators are determined and as the pay-for-performance system is widely
implemented.
For more information on the 2006
CMS Oncology Demonstration Program, go to the National Comprehensive Cancer
Network at www.nccn.org.
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to "In this issue....."
FDA
Guidance on Patient Reported Outcomes: Discussion, Dissemination,
and Operationalization--February 23-25, 2006
submitted by guest contributor, Cynthia
Chauhan
This
meeting was held as a forum for the FDA and professional stakeholders to
discuss the FDA Guidance Document for assessing PROs (Patient
Reported Outcomes) in clinical trials. This
guidance document is still open to public comment. You are encouraged to review
the document at http://www.fda.gov/cder/guidance/index.htm,
reading closely with a mind to considering whether or not Patient Reported
Outcomes are being held to a higher standard than other measures. This document
and its implementation are excellent opportunities for patient advocates to
engage in appropriate watchdogging to make sure the importance of the label
does not supersede the importance of the patient and his/her reporting of
experience.
A concern is whether some will read the documents guidance
“shoulds”
as regulatory “musts.” Even though the FDA lays out, in good faith, narrow
suggestions, not broad mandates, a relevant question is what steps are being
taken to assure that their own staff, much less those answerable to it, will construe
it thusly? For those who are committed
to hearing and reporting the patient voice in all of its nuances, for making
sure that a hallmark of intervention is individualized responsiveness to the
whole person, this document and its implementation must be carefully
monitored. While I believe the FDA and
all of the people engaged in the forum were well-intentioned, I was reminded of
Yogi Berra's insightful statement, "In theory, there's no difference
between theory and practice; in practice, there is." Here is an
opportunity for watchdog advocates to make sure that the theory and practice
mesh in the best interest of the patient.
Click here
to link to the
commentary
"A Patient Reported Observation" by Cynthia Chauhan
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ADVOCATE LECTURE
SERIES ON GENOMICS, PHARMACOGENETICS AND TISSUE COLLECTION, STORAGE AND ACCESS
The
Indiana University Department of Defense Breast Cancer Center of Excellence and
the Research Advocacy Network co-sponsored an Advocate Lecture Series in March.
The lecture series informed advocates about the importance of genomics,
pharmacogenetics and biospecimen collection and storage in making targeted
treatments available to patients.
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Research Advocacy
Network Activities
- April 1-5 AACR Annual Meeting
- April 9 - 11 caBIG Annual Meeting
- April 10-13 NCCTG Spring Meeting
- April 19-23
Tenth Intercultural Cancer Council Biennial Symposium, Washington DC
- April 28 – May 1 NSABP Spring Meeting
- May 23 – Coalition of Cancer Cooperative Groups
Scientific Leadership Council on Lung Cancer
- May-June Focus on Research Webconferences
- June 1 Women Against Lung Cancer Annual Meeting,
Atlanta, GA
- June 2-6 American Society of Clinical Oncology (ASCO)
Annual Meeting, Atlanta,
GA
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April Awareness
Events
- Cancer Control
Month
- Cancer Detection
& Early Awareness Month
- Cancer Fatigue Awareness
Month
- Head & Neck
Cancer Awareness Month
- Lymphoma Awareness
Month
- National Young Adult
Cancer Awareness Week - April 3-9
- Oral Cancer Awareness
Week - April 11 – 17
- Testicular Cancer
Awareness Week - April 1-7
Click here for a full listing
of Awareness Months/Events
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We need your help!
Your
Donation Makes a Difference! If you believe
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Research Advocacy
Network Welcomes
New Members!!!
Thanks to all of you who have recently joined the Network. For those
that have not
yet please go to http://www.researchadvocacy.org/
and click on "Join". There are no dues for Network membership and this
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Network News is currently published 10
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Editors and Authors: Elda
Railey, Judy Perotti, Mary Lou Smith
Special thanks to contributing authors
to this issue: Cheya Pope, Cynthia Chauhan
Network News is funded
in part by an unrestricted educational grant from AstraZeneca.
We
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