# Presentation: 400220

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

- Susan Vasquez
- May 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
**	**

## Slide 13

## The Surgeon General’s  Family History Initiative Launch

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

## Slide 15

## 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** **	*

## Slide 18

## My Family Health Portrait computer- 

- My Family Health Portrait computer-
- based tool

## Slide 20

## Slide 21

**Notes:**
The profile continues with the user filling in common illnesses. In this case, she’s a healthy young woman. 

## Slide 22

**Notes:**
The tool then helps you gather information about your family. It assumes everyone has a mother and a father and that the parents had mothers and fathers – grandparents – so they are filled in automatically. 

## Slide 23

**Notes:**
The tool then walks the user through filling in information for each relative. 

## Slide 24

**Notes:**
When all the information is filled in for all the relatives, the tool creates a portrait of the family in the form of a genetic pedigree. This shows what diseases were suffered by parents and grandparents, and that suggests prevention steps that should probably be taken for Jill and her children. 

## Slide 25

**Notes:**
The tool also produces a printed report. There are two pages shown together here. The point is that users should print this out and take the pedigree and the report to their doctor for a consultation. 

## 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

## 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

## 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

## 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

## 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

## 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

## 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_

## Slide 36

## 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_