Surgeon General’s My Family Health PortraitCombining Structured Data and Connectivity to Serve Consumers

Presentation by W. Gregory Feero, M.D., Ph.D. National Human Genome Research Institute

March 2, 2010

A crucial tool for primary care• Family health history is an excellent indicator of genetic

and shared environmental risk factors which can be important determinant of health.

• Family health history helps clinicians deliver better care, including prevention and early disease detection.

• However, family history is typically underused in primary care settings.

Surgeon General Initiative • In 2004, the Surgeon General introduced the first version

of the web-based tool, “My Family Health Portrait.”

• This tool helped consumers by enabling them to complete histories at home.

• However – the original tool was NOT standards-based,

interoperable, or EHR-ready.

New interoperable tool • In January 2009, the Surgeon General launched a new

“2.0” family health history tool.

• The new tool is standards-based, interoperable and EHR-ready.

• Consumers can share histories electronically – with other family members and doctors.

Standards-based

• XML-based• HL7 family history model• LOINC• SNOMED-CT• HL7 Vocabulary• Minimum core data set• Compatible with existing electronic

genealogy tools

• Achieved in 2008 by a public/private task force convened by the AHIC Personalized Health Care workgroup

• Defined the minimum FHH data elements that every EHR and PHR should be able to capture

• HITSP approved interoperability Dec. 2008– See:

http://hitsp.org/ConstructSet_Details.aspx ?&PrefixAlpha=1&PrefixNumeric=08 7

New Standards and Enhanced Utility for Family Health History Information in the Electronic Health Record: An Update from the American Health Information Community's Family Health History Multi-Stakeholder WorkgroupW. Gregory Feero, Mary Beth Bigley, Kristin M. Brinner The Family Health History Multi-Stakeholder Workgroup of the American Health Information Community J Am Med Inform Assoc 2008; 15: 723-728.

Arriving at Standards

Openly-available source code

• The Surgeon General’s new tool is openly-available for other organizations to adopt.

• Source code for the tool is available without charge. No attribution to Surgeon General is needed.

• However, the adopted tool must preserve interoperability features.

Partnerships: Broader Reach, Greater Impact• The Office of the Surgeon General seeks connectivity

partnership agreements to help expand the usefulness of the family health history tool, provided:

personal privacy is protected, and

interoperability is maintained.

The HealthVault Connection

• First connectivity partner to enter a cooperative agreement with the Office of the Surgeon General is Microsoft HealthVault.

• This collaboration offers:

Consumer control of personal information Seamless connection to HealthVault affiliates

What partnership means: Information Sharing• Information entered and formatted on the MFHP tool can easily be

saved to a Microsoft® HealthVault™ account.

• Structured information can be saved seamlessly from HealthVault to compatible PHRs and EHRs.

• Information can be shared securely with family members to help them build histories, or offer new information.

• Information can be shared easily with health care providers, to better inform primary care, support effective prevention, and ultimately be used with clinical decision support tools.

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What partnership means: Information Utility• Unlike free-text entries, structured family health history data can

interoperate with other standards-based tools.

• Information structured by the Surgeon General’s tool and saved in HealthVault can be integrated with other partner tools to deliver personalized information and services.

• Consumers can use tool-structured data saved to the HealthVault account to obtain personalized assessment of disease risk (eg, from Mayo Clinic’s “Health Manager”) and other individualized health information.

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Mary’s story• Mary is a 41-year-old mother of three who recently

returned to Minnesota to care for her aging parents.

• Mary’s brother Mel has recently been diagnosed with colorectal cancer.

• Mary needs personalized information about what her brother’s diagnosis may mean for her own health management and her family’s.

My Family Health PortraitStructured Data + Connectivity = Interoperability

35Surgeon General's My Family Health Portrait

Family Health History

For More Information

fhh@hhs.gov