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Improving Cancer Communications
NCI's communications efforts are rooted in the National Cancer Act of 1971, which directed the Institute to
"Collect, analyze, and disseminate all data useful in the prevention, diagnosis, and treatment of cancer, including
the establishment of an international cancer research data bank to collect, catalog, store, and disseminate insofar
as feasible the results of cancer research undertaken in any country for the use of any person involved in cancer
research in any country." By not limiting the range of NCI's communications activities to the United States, the
U.S. Congress showed an awareness of the complexity of cancer as a global problem and an understanding that
eliminating the suffering and death due to cancer can only be achieved by drawing on the experience, expertise,
and efforts of cancer researchers around the world.
Although the information dissemination activities dictated by the National Cancer Act were focused on cancer
researchers only, subsequent legislation widened the scope of these activities to include health professionals,
cancer patients and their families, and the general public. For example, the Public Health Service Act of 1996
called upon NCI to: provide physicians and the public with state-of-the-art information about the treatment of
various forms of cancer; identify cancer clinical trials that might benefit patients; and disseminate the results of
cancer research using information systems available to the public.
One approach NCI uses in meeting its communications requirements is to disseminate information stored and
maintained in the Physician Data Query (PDQ®) database. International cancer communications activities based
on PDQ® are described
in International Access to Information on NCI's PDQ® Database.
NCI also supports the International Network for Cancer Treatment and Research (INCTR), headquartered in
Brussels, Belgium, which helps to build capacity for cancer treatment and research in developing countries. NCI's
collaboration with INCTR is described
in greater detail
below.
The following are additional examples of NCI's international communications and outreach activities.
In 2000, the ICR Partnership was formed under the leadership of NCI and the
Congressionally Directed Medical Research Programs of the U.S. Department of Defense.
This partnership united a group of cancer funding organizations within the United States
and the United Kingdom to adopt a common language for discussing, comparing, and
presenting their cancer research portfolios. Efforts are underway to expand the membership
to include additional international partners to more fully represent the depth and
breadth of cancer research worldwide.
The ICR Partnership adopted a common coding scheme for classifying research areas -
the Common Scientific Outline (CSO) - along with an agreed upon cancer disease type
scheme, which together provided the tools needed to lay the groundwork for subsequent
portfolio analyses that will enable informed strategic planning within and among
partner organizations.
The ICR Partnership also launched the International Cancer Research Portfolio (ICRP)
web site (www.cancerportfolio.org) in 2003 to provide access to information about
cancer research supported by ICR Partnership members. This online resource allows
scientists, patient advocates, and the international cancer community to search, browse,
and sort the research portfolios of member organizations by cancer type and research
area, providing information about the funding organizations, awardee institutions, and
principal investigators along with detailed research abstracts. The international expansion
of the ICR Partnership will further enhance this resource as a step toward an integrated
global research system, allowing for improved collaboration and strategic coordination.
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Worldwide dissemination of current, evidence-based information about cancer research, treatment, supportive care,
genetics, screening, and prevention is a high-priority activity for NCI. A number of NCI's international communications
activities are centered on information contained in the Institute's Physician Data Query (PDQ®) database.
PDQ® was launched in 1977 as an online registry of cancer clinical trials that was directly accessible by NCI staff only.
In 1982, access to PDQ® was widened when it became available through a dial-up connection to the U.S. National
Library of Medicine. In 1995, PDQ® information was made available on the World Wide Web, where it can now be
accessed through NCI's main Web site, www.cancer.gov.
PDQ® includes peer-reviewed, evidence-based information summaries about cancer treatment, supportive care,
genetics, screening, prevention, and complementary and alternative medicine. Most of these summaries are available
in two versions: one for health professionals and another for patients. PDQ® also includes a registry of more than
4,300 active and 15,000 closed cancer clinical trials from around the world. In addition, it contains directories of
persons and organizations involved in cancer care and controlled, cancer-related biomedical terminology.
In 1990, NCI's Office of International Affairs (OIA) began information dissemination projects at cancer centers in developing
countries to provide access to PDQ®, as well as to reference citations to the latest published cancer research.
NCI also developed a licensing program for PDQ® that makes information in the database available to academic, commercial,
and nonprofit organizations worldwide at no cost. Currently, NCI has international PDQ®-licensing partners in
Argentina, Chile, Germany, Japan, and the United Kingdom.
It is important to note that PDQ®-related communications activities are not solely unidirectional. NCI's Liaison Office
in Brussels, Belgium works with clinical trial groups in Europe to register their protocols in the PDQ® clinical trials
registry. Similarly, NCI's licensing partner in Japan submits Japanese clinical trial protocols for inclusion in PDQ®.
In addition to sharing the information in PDQ® with the international community, NCI also shares its experience and
expertise in developing and maintaining large cancer-related databases. In 2005, for example, NCI offered assistance
to the French Institut National du Cancer to help in the development of a comprehensive French national cancer
clinical trials registry.
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NCI's Cancer Information Service (NCI CIS) is a founding member of the ICISG, a network
of world Cancer Information Services (CIS). The ICISG works under the auspices
of the International Union Against Cancer (UICC) to provide information and resources
regarding all aspects of cancer for those people concerned or affected by the disease.
The NCI CIS is active in ICISG's efforts to help nations, including developing nations like
Bangladesh and South Africa, develop their own CIS programs.
The ICISG is hosting a full-day workshop at the UICC's World Cancer Congress 2006
to help other nations, including developing countries, learn "How to Start a Cancer
Information Service." Topics to be covered include a basic needs assessment, scope of
services, strategic plan, staffing, and financing. The NCI CIS also developed a comprehensive
toolkit for workshop participants that provides examples of CIS training plans,
telephone call-record forms, data collection tools, training modules, and other tools that
can be used in establishing national CIS programs.
NCI provides funding and support for the International Commission on Radiological
Protection (ICRP), which was established to advance the science of radiological protection, in
particular by providing recommendations and guidance on all aspects of protection against
ionizing radiation. Recent Commission publications included a report on radiation safety
aspects of brachytherapy for prostate cancer using permanently implanted sources and another
report on protecting people against radiation exposure in the event of a radiological attack.
The ICRP is comprised of a Main Commission and four standing Committees (Radiation
Effects, Doses from Radiation Exposure, Protection in Medicine, and Application of
ICRP Recommendations), all served by a small Scientific Secretariat. Nations currently
represented on the Main Commission include Sweden, the United Kingdom, the United
States, Austria, Korea, China, Japan, Russia, Germany, and France.
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NCI supports the International Network for Cancer Treatment and Research (INCTR), a nonprofit, non-governmental
organization founded in 1998 by the International Union Against Cancer (UICC) and the Institut Pasteur in Brussels,
Belgium. The INCTR helps build capacity for cancer research and treatment in developing nations, promotes international
collaboration directed toward cancer control between wealthier countries and those with limited resources,
and seeks unique opportunities for cancer research in developing countries.
The INCTR has established cancer research linkages in a large number of countries and regions around the world.
To aid in this effort, NCI has supported the INCTR program to provide telemedicine connections - using the National
Institutes of Health's TELESYNERGY® system - between experts and institutions in the United States and Europe with
their counterparts in developing countries.
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| Dr. Ian Magrath |
In recent years, NCI has been a major sponsor of the INCTR's annual meetings. The 2004 meeting
in Cairo, Egypt attracted approximately 400 health care providers and researchers from more
than 40 countries, including a delegation of 25 physicians from Iraq. The Iraqi physicians were
given pediatrics textbooks, handouts, and articles relevant to workshop topics. The immediate
educational needs to improve the care of Iraqi children were identified at the meeting, such as
continuation of ongoing training, Internet and TELESYNERGY® access, and help with treatment
protocols. The 2005 annual meeting, which was held in Chennai, India, drew approximately
300 delegates from 37 countries. The 2005 meeting had sessions on topics such as emerging
technologies and palliative care.
Finally, NCI's Liaison Office in Brussels assists the INCTR with some of its education and training
activities, and Dr. Ian Magrath of NCI currently serves as the INCTR's president.
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The Clinical Data Interchange Standards Consortium (CDISC) is an international nonprofit
organization with more than 150 members. The goal of CDISC is to develop
worldwide standards to support the electronic submission, acquisition, and exchange
of clinical trial data to improve medical research and related areas of health care. The
NCI's Enterprise Vocabulary Services (EVS) Project is working with CDISC to develop
controlled terminology for gathering and reporting clinical trial data. The NCI is also
working with CDISC's Protocol Representation Group to develop a machine-readable
and human-readable structured protocol representation standard that will support the
entire lifecycle of a clinical trial protocol. CDISC's Study Data Tabulation Model
(SDTM), which was approved by the U.S. Food and Drug Administration in 2004, has
become an internationally used standard for the tabulation and submission of clinical
research data.
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