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Know Your Family Health History
Calling on
all Americans to know their family history, U.S. Surgeon General
Richard H. Carmona, M.D., M.P.H., has unveiled an updated version of a
computerized tool designed to help families gather their health
information.
Dr. Carmona encouraged families to collect important health history information that can benefit all family members.
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," he said.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. The tool, called "My Family Health
Portrait," is available at www.hhs.gov/familyhistory.
Health-care
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 has launched an
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.
Employee
participation in the family history project will be entirely voluntary,
said Gary Gottlieb, M.D. M.B.A., president of Brigham and Women’s
Hospital. 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
theuser’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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