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Written by:  Deborah Golumbek
Date: January 1, 2010

About five years ago, my father was diagnosed with prostate cancer, which was detected by a routine test. Following treatment, he is currently fine and cancer-free. A friend discovered her aunt has breast cancer. Another friend learned, after attending an extended family reunion, that her husband's family has a history of alcoholism and substance abuse. And when I recently took my son to the eye doctor, she asked at what age I started wearing glasses.

What is the common thread in these stories? They are all perfect examples of why everyone should have a medical family tree. There is a reason doctors request a family history form, and part of its purpose is to determine health problems you may be predisposed to given your genetic make-up and the types of diseases that may run in the family.

Tracking family medical histories

According to a recent study by the U.S. Centers for Disease Control and Prevention, 96 percent of Americans believe that knowing family history is important to their health. However, according to the same survey, only one-third of Americans has ever tried to gather and organize a family health history.

The best way to condense, organize and generally keep track of your family's health profile is to make a medical family tree. Not unlike a genealogical family tree, a medical version tracks illnesses, diagnosis, age of onset and other information for any medical issues that may run through your family's branches. And great tools are now available to help organize this information.

The U.S. Surgeon General recently launched a Family History Initiative called "My Family Health Portrait," available at www.familyhistory.hhs.gov. The site helps families organize their medical history and provides each family member with a record that contains information such as age, weight, height, known diseases and date of diagnosis.

Participants enter information about how many aunts, uncles and children they have to format a family tree. Medical information is entered into each person's record, and a final version is available to print or download.

No information is stored on the Internet with this site. Instead, downloading the information to a flash drive to share with relatives and physicians is recommended. One bonus of this online version is that any new family member can orient the tree with himself or herself in the center and information is retained. For example, I can give my family tree to my cousin, and she can input her information and already have medical information on her aunt and uncle, my parents.

While people agree that this type of information is useful, it may not be easy to acquire. Most genetic counselors suggest three generations of history to get a clear picture of genetic diseases, but family members are sometimes deceased. If so, ask older relatives if they remember details to an illness or can offer a source who may know. Since some people may not want to share private information, explaining your purpose may help your cause.

Personal health records

While recording your extended family medical history, it also is a good idea to organize your children's medical history. Most parents know their child's allergies, and maybe what to expect during well-child heath care visits, but where are the lists of which child missed an MMR (measles, mumps and rubella) vaccine because she was running a fever at the time of a scheduled visit? If you have several children, how do you keep track of ear infections and the dates of the last tetanus shot? Summer camps, scouts and school medical forms ask for this type of information, and a personal health record is the place to record and file it.

Lou Ann Wiedermann, director of practice resources at The American Health Information Management Association, says a personal health record is mandatory. "I have a friend who gives a CD with a form to use for a health record as a baby shower gift so the new mom can keep track of immunizations, family histories, diagnosed illnesses and more," she explains. "Personal health records can be in any format you want, Word [or] Excel. You can keep them on a thumb drive or a paper copy. But they should be in one easily accessible place."

Wiedermann, a mother of four, stresses the importance for parents to keep track of their child's health and their own. "Health care is a consumer product. Parents have a voice in their child's care, and the more information you have about your child's medical history, you can make better decisions when it comes to their health care."

Digital and hard-copy options

The Mayo Clinic has developed a new free product that helps parents keep track of their children's medical history, and their own. Mayo Clinic Health Manager, www.healthmanager.mayoclinic.com, was launched in June 2009. With some input from you, it will keep track of your child's immunization records, growth charts and more. One feature is the ability to store medical records and share these, at your discretion and with your permission, with new doctors or specialists.

"This application is designed specifically to meet the needs of those who are tasked with managing their family's health and wellness," says David Cerino, general manager of the Consumer Health Solutions Group at Microsoft. "We paid particular attention to the types of things that are important to parents, to better serve them as they look after the wellness of their children."

Some families also find themselves responsible for an aging parent's medical care. Health Manager can keep these records too.

Is it safe to put this information online? "Yes," says George Scriban, senior product manager at HealthVault, the technology behind Mayo Clinic's Health Manager. "We have four principles for HealthVault. They are that the user controls the data and inputs information to the record. No one but you can add information to your record. The user decides who can see the data and what can be shared. Microsoft also does not use the information for targeted advertising."

Scriban says it was designed with moms in mind. Noting that the first question your doctor asks is usually "Is there a family history of...?" Scriban says that HealthVault is the technology that keeps that information private and secure and allows the information to be shared with doctors, hospitals and pharmacies around the globe. "We provide the plumbing, the technical aspect of hosting the information. And we see to it that it lives up to its name of a vault."

If the Internet format is not for you, however, you can still keep track of your medical family tree with something as simple as an Excel spreadsheet that lists each family member. This information can still be shared with other family members.

Wiedermann likens it to sharing credit card information. "You wouldn't want to post it on Facebook," she says.

If you prefer a paper version of your medical family tree, the National Society of Genetic Counselors Web site, www.nsgc.org, provides an example.

Share for better health care

So you've called and e-mailed questions to relatives about their medical background. You've gathered it, picked a format and filled it out. What next? The obvious answer is to share this document with your health care providers. Health histories help doctors provide better care. If you are at high risk for a disease, they can provide recommendations to reduce risk and look for early warning signs.

Scriban relates the story of a physician who treats pediatric asthma patients. "While the acute asthma patient may see a doctor three or four times a year, there are 360-plus days when that patient and that parent are on their own with treatment and peak-flow meters. The parent can input the results of the at-home treatment and really give the physician a look at what is happening each day. It is invaluable knowledge for the physician to have."

Some offices are already equipped to access your information electronically, and while some are not, chances are they will be in the near future. Talk to your doctor about having a personal health record and your family medical tree. Whatever format you choose, it is important information to have.

Deb Golumbek is the former editor of a parenting magazine where she wrote extensively about education, health and parenting. She is the mother of two growing boys and a freelance reporter for a regional newspaper.

Resources

Mayo Clinic Health Manager
www.healthmanager.mayoclinic.com
Free site where parents can build an online medical family tree that can be linked to any physician or hospital with Microsoft's HealthVault access.

U.S. Surgeon General's My Family Health Portrait
www.familyhistory.hhs.gov
U.S. Government Department of Health and Human Services Web site; families can use the site to build a database of family medical history and then download or print a copy.

National Society of Genetic Counselors
www.nsgc.org
Sample of what a family medical tree could look like if you want to make a paper copy.



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