When the American Health Information Management Association urged the public in 2005 to keep updated medical records, the group rationalized that no one physician maintains a complete file of all of a patient's medical information. Patients who keep copies of their records ensure better care for themselves, according to the Association.
Another way to get better care is to keep an updated family health history, said Suzanne O'Neill, who has a doctoral degree in genetics and works as a clinical researcher and genetics counselor at Evanston Northwestern Healthcare's Center for Medical Genetics. The Center studies the role of family history and genetics in disease and also works with about 900 patients annually.
Physicians typically gather family history during new patient visits, but rarely during follow-up appointments. Technology now allows patients to update their history through an electronic health pedigree or family tree.
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Completing a history makes it "a lot easier for people to be systematic about finding the cause of death or disease history of each of their immediate relatives," O'Neill said. These tools allow people to print their pedigrees and discuss them later with their doctors, she said.
Helps doctors
"It's a great way to collect information before patients get here," said Dr. Jefferson Schott, a internist who practices in Long Grove. It also saves time, he said, because patients have an opportunity to think about their family history before they see their doctors.
"A lot of times, on the spot when you're asked these questions, the patients can't quite remember who had what and what cancer a grandmother had or an aunt had and they need to go check with family members about that," Schott said.
Also it's easier for physicians to interpret pedigrees than the typical forms doctors use to gather family history. "I tend to think of things graphically and I think most physicians do," Schott said. "With this kind of complex information it's much easier to understand when you're looking at a pedigree diagram."
Creating a family health history is simple, inexpensive and easy, O'Neill said, and can include everything from genetics to factors like smoking and diet.
"It's important that people who are at risk in terms of genetic disease realize that they are at risk, and not fall through the cracks, and get the kind of services they need," she said.
While some genetic tests are available for some disorders such as hereditary breast and ovarian cancer, other more complex diseases like heart disease are likely caused by a combination of genetic and environmental factors, O'Neill said.
"Knowing your family history can help you to sort of be motivated to pay attention to your risk of certain diseases and adopt a healthier lifestyle."
MyGenerations
ENH began using the Web-based MyGenerations family health program in 2004, six years after O'Neill started developing it. MyGenerations lets users assess a history, flagging diseases such as colon cancer, and provides risk assessments based on that history.
Questions include listing the age of parents and their siblings, whether they had cancer and at what age they had it. The 15-minute survey produces an assessment of hereditary cancer risk and general cancer risk, along with recommendations. For example, a woman who has an average risk for hereditary cancer should have yearly mammograms starting at age 40, and tests for colon cancer at 50.
My Family Health Portrait
Another Web-based tool, My Family Health Portrait, (familyhistory.hhs.gov/), allows patients to assess their family history for heart disease, stroke, diabetes, breast cancer, ovarian cancer and colon cancer. The program, developed by the Surgeon General's Office and the National Human Genome Research Institute, part of the National Institutes of Health, asks participants for family history. It then furnishes them with a report that includes a printable pedigree on which relatives had which diseases. It allows for updates, and provides an informative chart report on family mortality causes and age of diagnosis.
Family Healthware
ENH is one of three medical centers studying whether one of the latest Web-based, family risk assessment programs, called Family Healthware, actually impacts a person's lifestyle choices, risk perceptions and communication habits with doctors or families. Family Healthware was created by the Centers for Disease Control and Prevention and is not yet available to the public.
The randomized clinical trial (Family Healthware Impact Trial, or FHITr) of 3,785 patients began in 2005 and ended last fall.
Like other programs, it surveys users for their history, then produces a family tree. It provides risk assessments and generates risk scores from "average" to "high" for six chronic conditions: Heart disease, diabetes, stroke, colon cancer, breast cancer and ovarian cancer. The program doesn't factor lifestyle behaviors into the risk scores, but does include them when creating personalized recommendations for screening and prevention.
The impact
Researchers extensively surveyed Family Healthware users before and after they used the program trying to learn how it impacts them.
For example, if a woman under age 40, who hadn't had a mammogram yet, used the program and found out she had a high risk for breast cancer, the goal would be to see if she would have made plans for a mammogram within six months of using Family Healthware, O'Neill said.
Researchers also hope the tool will promote more discussion between the woman and her doctor, as well as other women in her family who may also be at risk.
"So the goal is to see that if someone finds out that they are at increased risk for one of these diseases, if their physician management, if their personal management or their own lifestyle behaviors changes as a result of the tool," O'Neill said.
Whether Family Healthware becomes accepted by primary care doctors depends on how useful researchers determine it is.
Dr. Wendy Rubinstein, director of ENH's Center for Medical Genetics and another of the trial's principal investigators, said she believes the tool can help physicians and their patients.
"It's a time saver," she said, "particularly because the way that this tool works is that the patient fills it out themselves and then, with the physician and the patient, they can embark on a discussion right away."
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