2. 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

3. 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.

4. 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.

5. 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.

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

7. 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: http://hitsp.org/ConstructSet_Details.aspx ?&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. 7

9. 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.

10. 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.

11. 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

12. 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.

13. 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. 13

14. 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. 14

15. My Family Health Portrait Structured Data + Connectivity = Interoperability

36. For More Information fhh@hhs.gov