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A New Tool for Maintaining a Family Health History

healthtreeThe Department of Health and Human Services has just released an updated and improved version of the U.S. Surgeon General’s Internet-based family health history tool1. It makes it easier for people to assemble and share family health history information. The data can also be used to help caregivers provide better care.

Acting Surgeon General Steven Galson, a rear admiral in the U.S. Public Health Service, says – “Family history has always been an important part of good health care, but it has been underused. Today, with our growing knowledge of genetics, family history is becoming even more important. The new tool will help consumers and clinicians alike. It will also serve as a platform for developing new risk assessment software that will help in screening and prevention of cancer, heart disease, diabetes, and other conditions.”

Some large health care organizations and private companies, such as Google and Microsoft have been developing online personal health databases, but they all require patients and physicians to store information on a central database, raising security and privacy concerns. The new version of the Surgeon General’s “My Family Health Portrait” tool takes a different approach. It has these major features:

  • Privacy: The family health history tool builds a family health tree, but the personal information is not kept by a government or other site. Users download the information to their own computer, so they have complete control over how the information is used.
  • Convenience: The tool is available on the Web. Completing the family health history profile typically takes 15-20 minutes and Information is easily updated or amended.
  • Standard format: Patients should not have to keep filling out different health history forms for different practitioners.
  • Electronic Health Record (EHR)-ready and Decision support-ready: Because the new tool is based on commonly used standards, the information it generates is ready for use in EHR and personal health records. It can also be used in developing clinical decision software, which helps the practitioner understand and make the most use of family health information.
  • Sharing: The information is in electronic form, so it can be easily shared with relatives or with practitioners. Relatives can add to the information, and a special re-indexing feature helps relatives easily start their own history based on data in a history they received. Practitioners can help consumers understand and use their information.
  • Personalization of care: Family history information can help alert practitioners and patients to patient-specific susceptibilities.
  • Downloadable and customizable: The code for the new tool is openly available for others to adopt. Health organizations are invited to download and customize, using the tool under their own brand and adding features that serve their needs. Developers may also use the code to create new risk assessment software tools.

Early adopters of the new tool include: the National Institute of Genomic Medicine of Mexico (INMEGEN); The Indian Health Service (which helped develop the tool); and the Lance Armstrong Foundation, a cancer advocacy organization. The latter’s founder and Chairman, Lance Armstrong, says – “A strong family health history tool can be an important element for guiding medical decision-making, especially in the area of cancer screening, prevention and early detection. This tool will further the capabilities of electronic health records and takes a significant step toward improving clinical care.”

We’re completing our parts of the family health tree and will then distribute the files to our children for them to add their own information. The hardest part was remembering when conditions were diagnosed or treated, but the tool allows you to put in approximate ages rather than exact ones. We also referred to the family genealogy records, which we keep in a PAF database. We’ve added links to some genealogy tools, some independent health record databases (which can also link to some pharmacy records) and the new family health history site to the Useful Sites page.

 1  The Surgeon General’s Family Health History Tool.

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2 comments to A New Tool for Maintaining a Family Health History

  • With havin so much content do you ever run into any problems of plagorism or copyright infringement? My blog has a lot of unique content I’ve either created myself or outsourced but it seems a lot of it is popping it up all over the internet without my authorization. Do you know any techniques to help prevent content from being stolen? I’d definitely appreciate it.

  • Make sure that you display a Copyright notice at the foot of the blog and that you have a Terms of Use page. That won’t prevent plagiarism, but it will mean that you can insist people don’t repost articles. On the other hand, if they rebroadcast some or all of the material with a link back to your blog it may bring you more traffic. We quite often get requests to do that. Other than that, try using Google News to find keywords that you use on your site. That may pick up your material on the other sites. You should also look at this site.

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