HHS Offers Improved Computer Tool in Spanish and English; National Council of La Raza Takes Family History Curriculum Back to Communities
Calling on all Spanish-speaking Americans to “know their family history,” U.S. Surgeon General Richard H. Carmona, M.D., M.P.H., announced the availability of an updated version of a free, computerized tool in Spanish, designed to help Spanish-speaking families gather their health information. In addition, he praised the National Council of La Raza’s Institute for Hispanic Health (NCLR/IHH) for developing its own family history consumer outreach program for Spanish-speaking Americans based on the framework made available by the Surgeon General’s Family History Initiative.
“I encourage all families to take time to collect important health history information that can benefit all family members,” Dr. Carmona said. “Even with all the high-tech tests, medicines and procedures available in today’s modern health-care setting, family health history remains the cornerstone of our efforts to prevent disease and promote personal health. It’s clear that knowing your family history can save your life.”
Health-care professionals have known for a long time that many diseases, such as cancer, diabetes and heart disease, can run in families. A detailed family history can predict the disorders for which a person may be at increased risk, and help to develop more personalized approaches to prevent illness or detect it early, when it is most treatable. However, with doctors and nurses spending less time with their patients, sufficient family information is seldom gathered to make useful predictions.
To help families organize their health histories, the Surgeon General developed “My Family Health Portrait,” a computerized, information-organizing tool that makes creating a family health history easier and more efficient for both patients and health-care professionals. Now, a new, free, Web-based version of the tool is available in Spanish. It organizes a family’s health history into a printout that people can then take to their health-care professional to help determine whether they are at higher risk for disease. The Spanish version of the tool is available on the Internet at https://familyhistory.hhs.gov/spanish.
The tool guides users through a series of screens that helps them compile information for their family members on six common diseases — heart disease, stroke, diabetes, colon cancer, breast cancer and ovarian cancer — as well as information about any other conditions that are of particular interest to the family. The tool focuses on these six common diseases because a genetic contribution is known for each and because a preventive strategy can be developed to avoid illness. The tool creates a graphic printout that organizes the information into a diagram or a chart that can be given to a health-care professional to better individualize diagnosis, treatment and prevention plans. The tool allows users to go back and add more information as it becomes available.
The new version of the “My Family Health Portrait” tool is Web-based, which allows it to be operated on all computers with Internet access running any of several standard browsers, regardless of the computer’s operating system. All personal information entered into the program resides on the user’s computer only. No information is available to the federal government or any other agency.
The new version also has the added feature of allowing users to reconfigure family health information to shift the focus from the person entering the information to other family members. This enables users to produce personalized diagrams or charts for all of their family members, who then can share the information with their health-care professional. Another new feature is the ability for users to highlight certain diseases, such as heart disease or diabetes, on their family health diagram or chart, providing a picture of how that disease affects their entire family.
In addition to the features that enhance customization of family health information, the updated version gives users more background information on health conditions, and gathers more relevant details to assist health-care professionals, such as a patient’s height, weight and calculated body mass index (BMI).
Users also will still have the option to download the original “My Family Health Portrait” software and install it on their computers if they have the Windows operating system. As is the case with the new, Web-based version of the tool, all personal information will reside on the user’s computer only.
Dr. Carmona also recommended that families and employers in all parts of the country follow the lead of the National Council of La Raza’s Institute for Hispanic Health (NCLR/IHH), who partnered with the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases, both part of the National Institutes of Health (NIH), and developed their own family history curriculum, “Genetic Inheritance: Knowing Your Family Health History.”
NCLR/IHH has provided 33 promotores de salud (lay health educators) with linguistically and culturally appropriate materials to communicate the value of genetic information, and its relation to family history, to Spanish-speaking communities in an effort to improve their health. NCLR/IHH launched the yearlong education and training program in spring 2005.
“We partnered with the National Council of La Raza Institute of Hispanic Health on this community-based family history project because of the important role in the provision of health information that NCLR and its affiliate organizations provide to Spanish-speaking communities in this country, “said Vence L. Bonham, Jr., J.D., chief of NHGRI’s Education and Community Involvement Branch.
Training sessions were taught with the assistance of doctors and genetic counselors with an expertise in genetics. Promotores de salud were provided with information on how to accurately collect family history, how to take advantage of genetic testing services, as well as how to engage their community in policy discussions to improve the quality of access to health care relative to genetics. Training sessions were conducted at two community-based affiliate organizations, La Clínica del Pueblo in Washington, D.C. and La Clínica de La Raza in Oakland, Calif.
The promotores de salud who attended training sessions represented Mexican American, Central American and South American communities, and their backgrounds ranged from a family doctor to a former priest. All of them will take the materials and the lessons they learned from the “Genetic Inheritance: Knowing Your Family Health History” program back to schools, churches and clinics in their communities and conduct their own sessions about the importance of understanding family history and genetics as a disease prevention tool.
“One of the things we have learned from these training sessions is that a ‘word-of-mouth’ campaign is going to be the most efficient and effective way of disseminating information about genetics to our communities,” said Liany Elba Arroyo, IHH director for NCLR. “Our research shows that Latinos are largely unaware of the relationship between genetics and health. By linking the concept of genetics to family health history in this pilot project, we can promote greater understanding among immigrant communities.”
In addition to NIH-NHGRI, other Department of Health and Human Service agencies that are partnering with the U.S. Surgeon General in the family history public health campaign include the U.S. Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA) and the Agency for Healthcare Research and Quality (AHRQ).
The U.S. Centers for Disease Control and Prevention’s (CDC) Office of Genomic and Disease Prevention recently distributed packets of family history resource materials to chronic disease and genetic experts in the state health departments of every U.S. state and territory. These materials are designed to assist local health departments in their efforts to educate people about the importance of collecting a family health history, and to inform them about the new computerized tool that makes that process easier.
For additional information about the U.S. Surgeon General’s Family History Initiative, please visit www.hhs.gov/familyhistory.
The National Council of La Raza is the largest national Latino civil rights and advocacy organization in the U.S. and works to improve opportunities for Hispanic Americans. NCLR’s Institute for Hispanic Health (IHH) works through close partnership with NCLR affiliates, government agencies, private funders, and other Latino-serving organizations to deliver science-based, linguistically appropriate and high-quality health interventions. For more information on NCLR, please visit www.nclr.org.
NHGRI is one of 27 institutes and centers at the NIH, an agency of the Department of Health and Human Services (DHHS). Additional information about NHGRI can be found at its Web site, www.genome.gov.
Note: All HHS News Releases, fact sheets and other press materials are available at http://www.hhs.gov/news.