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Surgeon General’s My Family Health Portrait. Combining 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.

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surgeon general s my family health portrait

Surgeon General’s My Family Health Portrait

Combining 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
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
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
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
  • HL7 Vocabulary
  • Minimum core data set
  • Compatible with existing electronic genealogy tools
arriving at standards
Arriving at Standards
  • 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: ?&PrefixAlpha=1&PrefixNumeric=08

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 Workgroup

W. 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.


openly available source code
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
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
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


      • Seamless connection to

HealthVault affiliates

what partnership means information sharing
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.
what partnership means information utility
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.


mary s story
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 Portrait

Structured Data + Connectivity = Interoperability