The U.S. Surgeon Generals Family History Initiative

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The U.S. Surgeon Generals Family History
Initiative
Susan Vasquez May 2005
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The U.S. Surgeon Generals Family History
Initiative
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Why Family History?

• Most diseases are due to interactions of multiple
  genes and environmental factors.
• Almost every patient has available today, a free,
  personalized tool that captures many of these
  interactions and can serve as the cornerstone for
  individualized disease prevention.
• This valuable, free, and well-proven tool is the
  family history.

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Why Family History?

• Although we will gain important new genomic
  tools, family history will remain highly relevant
  for years.
• Family history helps predict risk for varied
  health concerns such as heart disease, colorectal
  cancer, breast cancer, ovarian cancer,
  osteoporosis, asthma, type 2 diabetes, suicide,
  etc.
• Yet, many people are unaware of relatives
  medical histories, and many health professionals
  underutilize this information in advising
  patients on how to maintain good health.

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Do People Care About Family History?

• In the Parade/Research!America 2004 survey of
  1,000 individuals
• ?? have found health information on the
  Internet to be very or somewhat helpful

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Do People Care About Family History?

• In the Parade/Research!America 2004 survey of
  1,000 individuals
• 65 have found health information on the Internet
  to be very or somewhat helpful

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Do People Care About Family History?

• In the Parade/Research!America 2004 survey of
  1,000 individuals
• 65 have found health information on the Internet
  to be very or somewhat helpful
• But, 96 thought, in thinking of their own
  health, that knowledge of family health history
  was very or somewhat important

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Do People Care About Family History?

• In the HealthStyles survey of over 4,000
  individuals
• 97 thought that knowledge of family health
  history was important

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Do People Care About Family History?

• In the HealthStyles survey of over 4,000
  individuals
• 97 thought that knowledge of family health
  history was important
• But, only 30 had actually ever collected health
  information from relatives to develop a family
  health history.

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Goals of the Surgeon Generals Family History
Initiative

• Increase the American publics awareness of the
  importance of family history in health
• Give the American public tools to gather,
  understand, evaluate, and use family history to
  improve their health
• Increase the awareness of health professionals
  about the importance of family history

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Goals of the Surgeon Generals Family History
Initiative

• Give health professionals tools to gather,
  evaluate, and use family history information and
  to communicate with their patients about family
  history
• Increase genomics and health literacy
• Prepare both the American public and their health
  professionals for the coming era in which
  genomics will be an integral part of regular
  health care.

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The Surgeon Generals Family History Initiative
Launch

• November 8, 2004
• Formal announcement of the Initiative

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The Surgeon Generals Family History Initiative
Launch

• November 8, 2004
• Formal announcement of the Initiative
• Release of My Family Health Portrait

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The Surgeon Generals Family History Initiative
Launch

• November 8, 2004
• Formal announcement of the Initiative
• Release of My Family Health Portrait
• Thanksgiving Day, 2004
• First Annual National Family History Day

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The Surgeon Generals Family History Initiative
Launch

• November 8, 2004
• Formal announcement of the Initiative
• Release of My Family Health Portrait
• Thanksgiving Day, 2004
• First Annual National Family History Day
• Publication of Family History- More Important
  than Ever by Carmona, Collins, and Guttmacher in
  The New England Journal of Medicine

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My Family Health Portrait computer- based tool
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Since the launch of the Initiative on November 8,
2004

• The Initiative has been highlighted in over ??
  media stories.
• 50
• 100
• 300
• 500
• 700
• 1,000

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Since the launch of the Initiative on November 8,
2004

• The Initiative has been highlighted in over ??
  media stories.
• 50
• 100
• 300
• 500
• 700
• 1,000

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Since the launch of the Initiative on November 8,
2004

• The My Family Health Portrait tool has been
  downloaded over ?? times.
• 5,000
• 15,000
• 40,000
• 100,000
• 250,000
• 320,000

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Since the launch of the Initiative on November 8,
2004

• The My Family Health Portrait tool has been
  downloaded over ?? times.
• 5,000
• 15,000
• 40,000
• 100,000
• 250,000
• 320,000

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Since the launch of the Initiative on November 8,
2004

• The NEJM article, Family History -More Important
  than Ever, by Drs. Carmona, Collins and
  Guttmacher has been downloaded over ?? times.
• 100
• 500
• 1,000
• 5,000
• 20,000
• 30,000

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Since the launch of the Initiative on November 8,
2004

• The NEJM article, Family History -More Important
  than Ever, by Drs. Carmona, Collins and
  Guttmacher has been downloaded over ?? times.
• 100
• 500
• 1,000
• 5,000
• 20,000
• 30,000

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Next Steps

• Improve My Family Health Portrait
• Continued media attention and outreach
• New projects and uses by any and all
• Make Thanksgiving the Annual National Family
  History Day
• Involvement by more federal and non-federal
  groups (e.g., MLA)

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To obtain the My Family Health Portrait tool

• 1) Download the computer based tool from
  www.hhs.gov/familyhistory
• 2) Download the PDF of the print tool from
  www.hhs.gov/familyhistory
• 3) Order a free copy of the print version
  through the HRSA Information Center at
• 1-888-Ask HRSA or www.ask.hrsa.gov

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Please visit the NLM booth to pick up the
following materials

• Copies of the My Family Health Portrait print
  version in both English and Spanish
• Background information on the Initiative
• Bookmarks advertising the initiative

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Questions?

• Contact Susan Vasquez at
• vasquezs_at_mail.nih.gov
• or visit
• The U.S. Surgeon Generals Family History Website
  
• www.hhs.gov/familyhistory

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Since the launch of the Initiative on November 8,
2004

• The Initiative has been highlighted in more than
  1,000 media stories
• The computer based tool has been downloaded over
  144,000 times
• The print version of the tool has been downloaded
  over 108,000 times
• An article in The New England Journal of
  Medicine, Family History -More Important than
  Ever, by Drs. Carmona, Collins and Guttmacher
  has been downloaded over 20,000 times.

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Genetics Resources

• NHGRI - www.genome.gov
• Genetic and Rare Diseases Information Center
• On-line health resources- http//www.genome.gov/11
  510197
• NLM - www.nlm.nih.gov
• MedLine Plus- http//medlineplus.gov
• Genetics Home Reference- http//ghr.nlm.nih.gov
• CDC - www.cdc.gov (click on genetics genomics)
• Information accessing providers
• NCI Cancer Genetics Services Directory-
  www.cancer.gov/search/geneticsservices
• National Society of Genetic Counselors-
  www.nsgc.org