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Family History Day
Surgeon General Says Use Thanksgiving to Share
Family Health History
Free improved computer tool helps family share
information
Nov. 23, 2005 - Calling on all Americans to “know
their family history,” U.S. Surgeon General Richard H. Carmona, recently
unveiled an updated version of a computerized tool designed to help
families gather their health information, and praised Brigham and
Women’s Hospital in Boston for joining in to expand the Surgeon
General’s Family Health Initiative.
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Click to Web Tools |
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"My
Family Health Portrait" is a web-enabled program that runs
on any computer that’s connected to the web and running an
up-to-date version of any major Internet browser.
The web-based tool helps users organized
family history information and then print it out for
presentation to the family doctor. In addition, the tool helps
users save their family history information to their own
computer and even share family history information with other
family members. |
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“This Thanksgiving marks the second annual National
Family History Day. I encourage all families to take time on this day -
or at any other family gathering throughout the year - to collect
important health history information that can benefit all family
members,” Dr. Carmona said.
“Even with all the high-tech tests, medicines and
procedures available in today’s modern health-care setting, family
health history remains the cornerstone of our efforts to prevent disease
and promote personal health. It’s clear that knowing your family history
can save your life.”
Dr. Carmona released an updated, Web-based version
of a free, computerized tool that organizes family health information
into a printout that people can take to health-care professionals to
help determine whether they are at higher risk for disease.
Healthcare professionals have known for a long time
that many diseases, such as cancer, diabetes and heart disease, can run
in families. A detailed family history can predict the disorders for
which a person may be at increased risk, and thereby help to develop
more personalized action plans.
However, as numerous pressures decrease the amount
of time that doctors and nurses spend with their patients, it has become
increasingly difficult to gather enough family information to make
useful predictions. The “My Family Health Portrait” tool is intended to
make that process easier and more efficient for both patients and
health-care professionals.
Dr. Carmona urged families and employers in all
parts of the country to follow the lead of Brigham and Women’s Hospital,
which held a press conference in Boston today to launch its effort to
support and evaluate the voluntary use of the Surgeon General’s “My
Family Health Portrait” tool among its more than 12,000 employees. The
workforce of the 735-bed hospital includes physicians, nurses,
administrative, service and management staff.
”Not only is Brigham and Women’s a nationally recognized hospital and
major academic medical center, it, like many hospitals, is a major
employer in its community. I commend Brigham and Women’s for recognizing
that collecting a family history can improve the health of their
employees, as well as the health of the employee’s family members living
throughout the community,” said Elias A. Zerhouni, M.D., director of the
National Institutes of Health (NIH), which is a partner in the U.S.
Surgeon General’s Family History Initiative.
In the past year, more than 360,000 copies of the
original “My Family Health Portrait” computer tool, which is available
in English and in Spanish, have been downloaded from the HHS Web site.
In addition, more than 85,000 print copies of the tool have been
distributed nationwide.
“Building on the foundation laid by the Human
Genome Project, we have made tremendous strides towards developing ways
to identify and quickly test for the glitches that we all carry in our
genes. But we aren’t there yet. So, the best thing each of us can do
right now to help our health-care providers develop a personalized
disease prevention plan is to gather a family health history,” said
Francis S. Collins, M.D., Ph.D., director of the National Human Genome
Research Institute (NHGRI), part of the NIH.
To expand the initiative’s reach and impact,
NHGRI’s Education and Community Involvement Branch this year sought
proposals for a demonstration project to educate and engage a
health-care community about the importance of family history. NHGRI
selected the Brigham and Women’s Hospital proposal from all the
applications for the one-year project, which will be supported by
$99,000 in NHGRI funds that are being matched by $99,000 from the
hospital.
“Brigham and Women’s Hospital is proud to serve as
the country’s first institution to participate in the U.S. Surgeon
General’s Family Health Initiative,” said Gary Gottlieb, M.D. M.B.A.,
president of Brigham and Women’s Hospital. “Our more than 12,000
employees are a direct reflection of the vibrant and multicultural
community we are here to serve. As such, we are eager to set an example
of how individuals, empowered to share their family medical histories
with their own health-care providers, can help shape our country’s
future understanding and treatment of disease.”
Dr. Gottlieb emphasized that employee participation
in the family history project will be entirely voluntary. Also, prior to
deciding about whether to take part, they will be provided with
extensive educational materials and support.
“We hope to apply what we learn among employees to
our patients and, ultimately, develop a model that can be used in other
hospitals and health-care institutions across the nation. Our effort
will identify obstacles to participation, as well as gather feedback
from those who choose to use the tool,” said Cynthia C. Morton, Ph.D.,
director of the hospital’s Cytogenetics Laboratory under whose
leadership the demonstration project was initiated.
In addition to the Brigham and Women’s effort, the
U.S. Centers for Disease Control and Prevention’s (CDC’s) Office of
Genomic and Disease Prevention has, on behalf of the U.S. Surgeon
General, recently distributed packets of family history resource
materials to chronic disease and genetic experts in the state health
departments of every U.S. state and territory. These materials are
designed to assist local health departments in their efforts to educate
people about the importance of collecting a family health history, and
to inform them about the new computerized tool that makes that process
easier.
Specifically, the “My Family Health Portrait” tool
guides users through a series of screens that helps them compile
information about six common diseases for each of their family members,
as well as enter information about any other conditions not on the list
that are of particular interest to the family. The tool focuses on six
common diseases because a genetic contribution is known for each, and
because a preventive strategy can be developed to avoid illnesses. The
tool creates a graphic printout that organizes the information into a
diagram or a chart that can be given to a health-care professional to
better individualize diagnosis, treatment and prevention plans. The tool
allows users to go back and add information as it becomes available and
does not require complete information about every family member.
The new version of the “My Family Health Portrait”
tool is Web-based, which allows it to be operated on all computers with
Internet access running any of several standard browsers, regardless of
the computer’s operating system. All personal information entered into
the program resides on the user’s computer only. No information is
available to the federal government or any other agency.
The new version also has the added feature of
allowing users to reconfigure family health information to shift the
focus from the person entering the information to other family members.
This enables users to produce personalized diagrams or charts for all of
their family members, who then can share the information with their
health-care providers. Another new feature is the ability for users to
highlight certain diseases, such as heart disease or diabetes, on their
family health diagram or chart.
In addition to the features that enhance
customization of family health information, the updated version provides
users with more background information on health conditions and includes
more relevant details to assist health-care providers, such as a
patient’s height, weight and calculated body mass index (BMI).
Users also will still have the option to download
the original “My Family Health Portrait” software and install it on
their computers if they have the Windows operating system. As is the
case with the new, Web-based version of the tool, all personal
information will reside on the user’s computer only.
Free, print versions of the tool are also available
at the Health Resources and Services Administration’s (HRSA’s)
Information Center at 1-888-Ask HRSA (275-4772). Callers should ask for
“My Family Health Portrait” in English (inventory # HRS00360) or Spanish
(inventory # HRS00361).
Department of Health and Human Service agencies
that are partnering with the U.S. Surgeon General in the family history
public health campaign are NIH-NHGRI, CDC, HRSA and the Agency for
Healthcare Research and Quality (AHRQ).
For additional information about the U.S. Surgeon
General’s Family History Initiative, visit
www.hhs.gov/familyhistory.
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