Health Heritage: New website for maintaining family's health history

How well do you know your health heritage — the risks that have been handed down to you? If your physician asked for your family's health history, could you provide it?

Chances are good that you could not, because there is no easy, uniform and secure way to collect and maintain accurate and complex health information.

But soon that will change.

A team of researchers at the University of Virginia received funding from the National Cancer Institute, an agency of the National Institutes of Health, to enhance a Web site called Health Heritage®. This site will enable family members to enter their family medical histories so that other family members and their health care professionals can use this information while dealing with medical issues.

We expect the new Web site, which will be free to consumers and build on previous research funded by the Robert Wood Johnson Foundation, to be online by 2012.

As medical professionals, we have watched as scientists, using space-age technologies, have deciphered the secret code of genetics. We now have unprecedented information about the genetic contribution to many common conditions. 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.

Yet, we still don't have a good, safe way for family members to collect or share confidential information about their health.

Why does this matter?

Because 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. If you were to ask your relatives for this information today, most wouldn't be able to give it to you.

So how does 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 create an account in Health Heritage® and enter your personal and known family health information. Health Heritage® can also, at your discretion, collect diagnoses and age of onset information about you and your relatives electronically using secure links to verifiable sources. You will then receive personalized recommendations. Health Heritage® is also being developed to be compatible with existing electronic health and personal health records. But it will have protections, now enabled by law, that will prohibit your employers and health insurance companies from seeing that information.

Over time, this reservoir of health information will become a living legacy for your children and grandchildren. It will help to personalize preventive health measures and medical treatments for everyone in your family.

Of course, no computer program will ever replace the skilled judgment of an experienced medical practitioner or expert genetic team. But given the constant flow of new genetic information, Health Heritage® is an easy way for individuals and medical professionals to keep up with the latest developments that might have an impact on your health.

One of our hopes is 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.

Right now, a patient's medical records are maintained by the hospitals, clinics and private practices where medical care is provided. If patients maintained more control over their medical records, they would decide who saw any or all of their health data and other personal information.

Current laws give you the right to request your medical information from your doctor or hospital, but few of us do. 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. With its development, we hope to help all Americans preserve and protect their most precious commodity: their health.

William A. Knaus, M.D., is the Evelyn Troop Hobson Professor of Public Health Sciences and founding chair of the University of Virginia School of Medicine's Department of Public Health Sciences. Wendy F. Cohn, Ph.D., is associate professor of public health sciences in the department's division of clinical informatics.

Source: University of Virginia