December 7, 2009 — For many, the holidays are a time for telling family stories and sharing memories. Two researchers at the University of Virginia would like you to share something else: health histories.
Listen to the UVA Today Radio Show report on this story by Marian Anderfuren:
And they're developing a uniform and secure way for you to keep that information, should you ever need it.
"It's important for us to know our health heritage – the risks that have been handed down to us," said Dr. William A. Knaus, the Evelyn Troop Hobson Professor of Public Health Sciences and founding chairman of the U.Va. School of Medicine's Department of Public Health Sciences.
Knaus and Wendy F. Cohn, an associate professor of public health sciences, are leading a team that has received a $3.6 million grant from the National Cancer Institute, an agency of the National Institutes of Health, to enhance a Web site called Health Heritage. This site enables families to enter their medical histories so that they and their health care professionals can use this information while dealing with medical issues.
The researchers anticipate that the new Web site, which is expected to be free to consumers and builds upon previous research funded by the Robert Wood Johnson Foundation, will be online by 2012.
Knaus said that scientists now have unprecedented knowledge about the genetic component of many ailments.
"Virtually all diseases have an inherited component and new tests can determine whether your genes put you at risk for disorders such as heart disease, cancer, diabetes or arthritis," he said. "Yet we still don't have a good, safe way for family members to collect or share confidential information about their health."
Cohn said genetic tests, as useful as they are, must be considered in the context of a family's particular medical history. Carrying a gene that predisposes you to have a heart attack is only one piece of the puzzle. Another is what scientists call the gene's "expression," a measure of how influential that gene is in your body.
"Genetic research has shown that the best family medical history includes specific diagnoses and ages of onset for every disease or condition that appears in first- and second-degree relatives and even in some third-degree relatives," she said. "But if you were to ask your relatives for this information today, most wouldn't be able to give it to you."
How will Health Heritage work and what will it provide?
Let's say your mother is diagnosed with diabetes and you wonder about your own risk. You would create an account in Health Heritage – which will have multiple layers of security, including password, security questions and eventually biometrics – and enter your personal and known family health information. Health Heritage can also collect diagnoses and age-of-onset information about you from health care providers – but only after you give permission. You will then receive personalized recommendations and can share information with relatives.
"It will have protections, now enabled by law, that will prohibit your employers and health insurance companies from seeing that information," Knaus said.
Knaus and Cohn hope that Health Heritage will not only encourage families to build mutually beneficial family histories, but also that family members will recognize the value of maintaining and controlling their own medical records.
"Current laws give you the right to request your medical information from your doctor or hospital, but few of us do," Cohn said. "Developing your own family health history is a great place to start learning how to collect and use this information."
Funding for Health Heritage comes from the American Recovery and Reinvestment Act of 2009, the federal economic stimulus package.
Families needn't wait for the new site to be up and running to start gathering health histories, Knaus said. You can visit the Genetic Alliance, where forms and booklets in English and Spanish can help you get started. The U.S. Surgeon General's Web site allows you to enter data electronically and print the results.