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Family History Initiative
Launched to Gather Family Health History Data
New Web site offers free tools for
gathering information
 Nov.
8, 2004 - U.S. Surgeon General Richard H. Carmona, M.D., today launched
a Family History Initiative to encourage all Americans to learn about
their families' health histories as a way of promoting personal health
and preventing disease. To assist this effort he also announced a new
Web site and free computer program to help individuals collect important
family health history information.
Carmona also declared this
Thanksgiving to be the first annual National Family History Day -- a
time for collecting important family health history information that can
benefit all family members. He held a news conference this morning along
with representatives of several agencies of the U.S. Department of
Health and Human Services. He encouraged Americans to use their family
gatherings as a time to collect important family health history
information that can benefit all family members.
The new, free computer program
organizes important health information into a printout that can be taken
to the family doctor and placed in the medical record. The new
computerized tool, called "My Family Health Portrait," can be downloaded
at
http://www.hhs.gov/familyhistory/.
"With this new family health
history tool we are entering the next generation of prevention," HHS
Secretary Tommy Thompson said in a news release. "In addition to healthy
eating and exercising, we know that technology and research can also
prevent and treat disease before the disease becomes debilitating. The
miracle of the human genome provides new hope for millions of Americans
and a new path to health for all of us."
"The bottom line is that knowing
your family history can save your life," Dr. Carmona said. "Millions of
dollars in medical research, equipment, and knowledge can't give us the
information that this simple tool can. When a health care professional
is equipped with a patient's family health history, he or she can easily
assess the inherent risk factors and begin tests or treatment even
before any disease is evident."
Most Americans believe that
knowing their family health history can be beneficial, but relatively
few have ever attempted to collect it in an organized way. According to
results from the Healthstyles 2004 Survey, conducted in August by the
U.S. Centers for Disease Control and Prevention (CDC) and to be
published later this month, 96 percent of Americans believe that knowing
family history is important to their health. The survey also shows,
however, that only one-third of Americans have ever tried to gather and
organize their families' health histories.
"We are proud to collaborate on
this project because clearly the public is eager for a tool to help them
collect and organize their family health history," said Muin Khoury,
M.D., Ph.D., director of CDC's Office of Genomics and Disease
Prevention. "It is our hope as families gather this holiday season,
they'll take the time to learn - and record - their families' health
histories so that they can continue to have years of family gatherings
together."
Family history is not new. Every
young physician learns that it is a valuable clinical tool to help know
what diseases to watch for in patients.
"Family history can be a window
into a person's genome," said Francis S. Collins, M.D., Ph.D., director
of the National Human Genome Research Institute, one of the 27
institutes and centers at the National Institutes of Health, and a
leader of the now-completed Human Genome Project. "In the future, tests
resulting from the Human Genome Project will make it possible to
identify the glitches we all carry in our genes, glitches that increase
our susceptibility to common illnesses. Until then, tracking illnesses
from one generation of a family to the next can help doctors infer the
illnesses for which we are at risk, and thus enable them to create
personalized disease-prevention plans."
Gathering enough family history
information to make useful predictions, however, has become increasingly
difficult as health care has become more complex, and numerous pressures
decrease the amount of time that doctors and nurses spend with their
patients. Even when a health care professional attempts to collect a
family health history, patients frequently do not know the details of
what diseases run in their families. The Surgeon General's Family Health
Initiative addresses these problems by helping people to gather and
record the information before going to their medical appointments.
The "My Family Health Portrait"
tool guides users through a series of screens that helps them compile,
for each family member, information about six common diseases, including
heart disease, cancer and diabetes. In addition, individuals are able to
add conditions not on the list. After information is collected about
grandparents, parents, siblings, children, aunts, uncles, and cousins,
the tool creates a graphic print-out that organizes the information into
a diagram that can be used by 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 is able to create a
diagram for an individual without complete information about every
family member.
The Agency for Healthcare
Research and Quality (AHRQ) operates a national database of medical
practice guidelines, developed by independent medical and professional
organizations, that can help individuals and their health care
professionals to customize prevention programs. Family health history is
one of the criteria for many of the practice guidelines, which
frequently recommend specific medical testing to detect an illness
early. The guidelines can be found at the National Guideline
Clearinghouse,
www.guideline.gov. AHRQ is part of the U.S. Department of Health and
Human Services.
The "My Family Health Portrait"
software can be downloaded from the Internet and installed on computers
using the Windows operating system with the .NET framework installed.
All personal information entered into the program is maintained on the
user's computer only; no information is available to the federal
government or any other agency. The software will be available in both
English and Spanish.
In addition to the software
tool, a print version of "My Family Health Portrait" will be available
in English and Spanish through the Federal Citizen Information Center
and consolidated health centers nationwide. Consolidated health centers
provide care to patients regardless of their ability to pay. HHS' Health
Resources and Services Administration funds the national network of more
than 3,600 community health centers, migrant health centers, health care
for the homeless centers, and public housing primary care centers.
To get a print version of the
tool, individuals may call the Federal Citizen Information Center at
1-888-8-PUEBLO (1-888-878-3256); write to: "My Family Health Portrait,"
Pueblo, CO 81009; or print out the tool at
www.hhs.gov/familyhistory.
For additional
information about the U.S. Surgeon General's Family History Initiative
please visit
www.hhs.gov/familyhistory.
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