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