Discovering a Family Health History Tool – A Summer Journey

Summer is frequently a more relaxing time of year when my schedule gets lighter, and special events occur that encourage me to take a brief respite from work. This year was no exception as I attended the reunion of my Mom’s family in Ponca, Neb. The triennial event gave me a chance to visit with extended family, reflect on my roots and enjoy the scenery and quiet of rural America. My cousins and I take the lead on planning the event, and one of my tasks this year was to document our family health history.

Relying on my informatics background, I searched online for resources I could use that provided the infrastructure and process, without compromising privacy. And I found a great tool!

Check out the National Institutes of Health (NIH) website that offers an online tool that helps users pull together information about their own family health history. The website also provides information about disease risk, the role of genetics and ways to promote the health of family members, which I found quite useful.

To create your own family health history, go to https://familyhistory.hhs.gov for My Family Health Portrait, which is a tool from the Surgeon General’s office. This tool provides the software to create your family health history, but your information goes into a file that is saved locally, so privacy issues are minimized. You can also share the document with your family or your doctor since the file is stored in an .xml format.

Another option is to use Microsoft HealthVault that lets you gather, store and share health information online and access it from the NIH web site. If you choose to copy your family history information from your HealthVault account, the website will copy data from your account and you will need to sign in.

In order to make the products of the My Family Health Portrait tool interoperable in an EHR environment, developers of the tool have used existing standards including the HL7 Family History Model, LOINC, SNOMED-CT and HL7 Vocabulary. In addition, the tool includes a subset of information from the minimum core dataset for family health history.
                                                                                                                                                              As you can imagine, the most interesting part of creating my family health history was the individual discussions with family members about health and illness. Some were quite timid about sharing any medical information, but once I explained the importance of awareness and prevention for future generations, they became less reluctant. To reassure even the most reticent of the group, I promised to only share the information with our family in aggregate format so that individuals would not be identified with specific diagnoses. Others were so appreciative that I was providing this service that they volunteered to search additional family health records of our ancestors.

As I reflect on this experience of talking with my family about health issues, I realize that once we reach the ‘nirvana’ of widespread adoption of electronic health records it will become less necessary to keep separate personal records. But, meanwhile, I am enjoying my role as the family nursing informatics pioneer while documenting key health information that can save the lives of our future generations.

I hope you will also be inspired to take on this role and use this tool to document the health history of your family! If you have used this or other tools, please share your experiences with me here on the HIMSS Blog.