New HHS HRSA Grant Will Fund Development of an Electronic Genetic and Family History Record for Doctors’ Offices

Todd P. Dezen, (914) 997-4608, tdezen@marchofdimes.com
Elizabeth Lynch, (914) 997-4286, elynch@marchofdimes.com
Joseph Mcinerney, 410-583-0600; jdmcinerney@nchpeg.org

WHITE PLAINS, N.Y., JULY 14, 2009 – A new electronic tool that will put family medical history at doctors’ fingertips – alerting them to a patient’s increased risk for birth defects or pregnancy complications – will be developed through a three year cooperative agreement with a $1.2 million grant from the Health Resources and Services Administration, Genetic Services Branch.

The National Coalition for Health Professional Education in Genetics (NCHPEG) will lead the project and will work with the March of Dimes, the Genetic Alliance, and the Newton Wellesley Hospital of Partners Healthcare to adapt or create a new tool doctors can use to gather a woman’s consistent family history information and analyze it immediately to improve patient care.

“Taking a patient’s family health history is an important way for doctors and other health care providers to evaluate the risk of common conditions such as heart disease or premature birth,” said Joseph McInerney, executive director of NCHPEG. “With this grant, we can improve how prenatal providers gather and use family health history to improve the health of their patients.”

“This project allows us to use state-of-the-art technology and apply a sophisticated understanding of genomics and family history to give more Americans a healthy start in life,” said Alan R. Fleischman, MD, senior vice president and medical director of the March of Dimes. “We hope doctors will use this new family health history tool to identify women at risk for having preterm labor or an infant with a birth defect. It will give women the information they need to improve their health and that of their babies.”

Patients in doctors’ offices will fill out a standardized family history questionnaire using a computerized tablet, instead of paper and pen. The information will be analyzed electronically, and the tool will provide red flags and recommendations for health care providers based on current professional guidelines. Providers may be prompted to ask more questions or to send a woman to a genetic specialist.

The tool also will encourage health care providers to update and use family history data throughout the lifespan of any female patient. The long-term goal is for the family history information to be combined with the patient’s other medical information into an electronic health record (EHR). The proposed health history tool will focus on existing prenatal and women’s health topics, including newborn screening, and will be compatible with the U.S. Surgeon General’s family history tool, the "My Family Health Portrait" Web-enabled program.

The partners say their goal is to help women have full-term pregnancies and healthy babies by educating providers and the public about the importance of family health history. They plan to disseminate the tool to increase access to the latest genetically based health care as part of good preconception and prenatal care.

The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com or nacersano.org.

NCHPEG promotes health professional education and information about advances in human genetics to improve health care by, integrating genetics into the knowledge base of health professionals and students of the health professions, developing educational tools and information resources to integrate genetics into health professional practice, and strengthening and expanding the interdisciplinary community of organizations and individuals committed to coordinated genetics education for health professionals.

Newton-Wellesley Hospital provides a wide range of services, including medical, surgical, obstetrical, orthopaedic, neonatal, pediatric and psychiatric care. It has served its community for over a century. The staff includes over 1,000 physicians practicing a full range of specialties. NWH is a teaching hospital for Tufts University School of Medicine and has established post-graduate training programs for Harvard Medical School residents.

Genetic Alliance transforms health through genetics, promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance brings together diverse stakeholders that create novel partnerships in advocacy; integrates individual, family, and community perspectives to improve health systems; and revolutionizes access to information to enable translation of research into services and individualized decision making. For more information about Genetic Alliance, visit http://www.geneticalliance.org.

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©2013 March of Dimes Foundation. The March of Dimes is a non-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).