The U.S. Surgeon General’s Family History Initiative Susan Vasquez May 2005.

The U.S. Surgeon General’s Family History Initiative

Susan VasquezMay 2005

The U.S. Surgeon General’s Family History Initiative

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.

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.

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

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

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

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

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.

Goals of the Surgeon General’s Family History Initiative

• Increase the American public’s 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;

Goals of the Surgeon General’s 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.

The Surgeon General’s Family History Initiative Launch

• November 8, 2004• Formal announcement of the Initiative

The Surgeon General’s Family History Initiative Launch

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

The Surgeon General’s 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

The Surgeon General’s 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

My Family Health Portrait computer- based tool

Since the launch of the Initiative on November 8, 2004

The Initiative has been highlighted in over ?? media stories.

1. 502. 1003. 3004. 5005. 7006. 1,000

Since the launch of the Initiative on November 8, 2004

The Initiative has been highlighted in over ?? media stories.

1. 502. 1003. 3004. 5005. 7006. 1,000

Since the launch of the Initiative on November 8, 2004

The “My Family Health Portrait” tool has been downloaded over ?? times.

1. 5,0002. 15,0003. 40,0004. 100,0005. 250,0006. 320,000

Since the launch of the Initiative on November 8, 2004

The “My Family Health Portrait” tool has been downloaded over ?? times.

1. 5,0002. 15,0003. 40,0004. 100,0005. 250,0006. 320,000

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.

1. 1002. 5003. 1,0004. 5,0005. 20,0006. 30,000

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.

1. 1002. 5003. 1,0004. 5,0005. 20,0006. 30,000

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)

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

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

Questions?

Contact Susan Vasquez at

vasquezs@mail.nih.gov

or visit

The U.S. Surgeon General’s Family History Website

www.hhs.gov/familyhistory

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.

Genetics Resources• NHGRI - www.genome.gov

• Genetic and Rare Diseases Information Center• On-line health resources- http://www.genome.gov/11510197

• 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