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Learn More About My Family Health Portrait

Questions & Answers for Consumers and Practitioners

Why is family health history useful?

Your family health history can help your health care practitioner provide better care for you. It can help identify whether you have higher risk for some diseases. It can help your health care practitioner recommend actions for reducing your personal risk of disease. And it can help in looking for early warning signs of disease.

What are the key features of the Surgeon General's family health history tool?

Susan G. Komen® has adapted the Surgeon General's "My Family Health Portrait" tool for our audiences. The Surgeon General's "My Family Health Portrait" is an internet-based tool that makes it easy for you to record your family health history. The tool is easy to access on the web and simple to fill out. It assembles your information and makes a "pedigree" family tree that you can download. It is private--it does not keep your information. It gives you a health history that you can share with family members or send to your health care practitioner.

How long does it take to fill out the form? What do I do with it then?

It should only take about 15 to 20 minutes to build a basic family health history. Individuals with larger families will spend more time entering in their information. Then you have the option of sharing it with other family members, if you wish. They may help provide information you didn't know. And relatives can start with your information and create their own history. You will also probably want to provide your health history to your health care practitioner. You and your health care practitioner should review it together before making it part of your medical record.

What about my privacy? Does the government (or others, like my employer) have access to my information?

The Surgeon General's My Family Health Portrait tool does NOT keep a government record of the information you fill in nor make your health information available to anyone else but you. It only provides the software for organizing your information. By accessing the tool on the web, you make use of that software. But the information you fill in is never available to anyone else, unless you choose to share or disclose it. After you fill in your information, it is available only to you for downloading. After that, it's up to you whether you want to share the information with other family members or provide it to your health care practitioner.

What if I need help in filling out the tool?

The tool should be easy to complete. If you need help with this website, it is available from the Application Support Desk at the National Cancer Institute's Center for Biomedical Informatics and Information Technology (CBIIT). You can contact the CBIIT help desk by email at and by telephone at 888.478.4423 (toll free) or 301-451-4384. The CBIIT help desk is open from 9:00 AM to 5:00 PM Eastern time, but they can take recorded messages from 5:00 PM to 9:00 AM Eastern time. The help desk can assist you with problems with the tool, but questions about your health history or medical conditions should be referred to a qualified health professional.

Why is it important that the tool "re-indexes" as different family members use it?

If you share your family health history with a relative, they can use your information as a starting point to create their own family health history. This is made even easier by re-indexing. "Re-indexing" means your relatives can make themselves the center of the information, start their own family health history, and the information that you provided is automatically readjusted to show its correct relationship to them.

How can I encourage other family members to share their health information?

Privacy is important, and no one should be forced to share personal health information if they don't wish to. But knowledge of family health histories may be spread over different family members, so sharing can help create the best product. Maybe the best way to encourage sharing is to help make it clear how this information can help health care practitioners provide better care and make more informed decisions.

What security precautions should I take when I share information with relatives?

Since the information that is aggregated by the FHH tool is personal health information, you should take reasonable precautions when sending this information to relatives. You should encrypt the information before sending it via email. If you don't have access to encrypted email; it may be better to transfer the information on a CD or memory stick; either in person or by regular mail.

What if my knowledge about my family health history is incomplete or imprecise?

Very few people are likely to have detailed and precise information about their family members/ health histories. But any information can be helpful. Once you have completed your history, it is important to talk about it with your health care practitioner. He or she may be able to help provide perspective, or even provide more detail based on the knowledge you bring.

Why is it important that the tool is "EHR- and PHR-ready"?

Electronic health records (EHRs) can help improve quality of care and improve cost-effectiveness of care at the same time. With interoperable EHRs, your health information can be available when and where it is needed--whether in an emergency, or merely when seeing a new physician. For EHRs to be useful, products like My Family Health Portrait need to be compatible and "EHR-ready." That way they can be embedded in EHRs (or in PHRs, the electronic "personal health record" maintained by the consumer). The Surgeon General's family health history tool is ready for use in EHRs.

What is "clinical decision support"? How does it apply to family health history?

"Clinical decision support" refers to software tools that help health care practitioners deliver the best quality care. These tools usually operate as a feature of EHRs. For example, these tools can alert a practitioner to potentially dangerous drug interactions by automatically matching a new prescription with the drugs a patient is already taking. Likewise the tools can remind a physician or consumer when certain procedures may be due. Such tools can interact with your health history information and help in forming personalized health recommendations.

Can doctors use information from the tool even if they don't have EHRs?

Yes. The most important goal is simply to record your information. The Surgeon General's My Family Health Portrait tool can help you do that easily. The information will be useful to you and your health care practitioner whether or not the practitioner uses electronic records yet.

Will the family health history tool give me advice on actions I should take?

No. The Surgeon General's tool helps gather information that will be useful for you and your health care practitioner, but it does not provide medical advice. You should consult with a health professional about advice based on your family health history information.

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