From 1998 through 2002, researchers at the University of Virginia Health Sciences Center developed and pilot tested a Web-based tool for collecting family health history. Called Health Heritage, it can enhance communication between primary care providers and individuals about their risks for common diseases with genetic components.
In 2012, the project director, William Knaus, MD, now at NorthShore University HealthSystem, began using the technology to identify patients likely to develop rare, hereditary diseases—enabling personalized medicine.
The Health Heritage Web site guides individuals in entering family history information. Then it applies a set of 89 evidence-based rules, or "algorithms," to this data to assess the individual's risk of developing certain conditions in five disease areas: oncology, cardiology, vascular disease, neurology and endocrinology.
It also provides health care recommendations for each of the conditions, written so both the individual and the physician will be able to understand. Researchers then conducted a pilot test of the Web site and compared its effectiveness to the usual method of patient chart review and the "gold standard" of the genetic counselor interview.
Health Heritage outperformed the usual care collection method with regard to the number of relatives identified, the identification of relationships, ages and disease conditions and the completeness of relatives' health histories. Health Heritage also performed favorably in comparison to results obtained through the genetic counselor interview. However, while more accurate in identifying conditions than the usual care method, Health Heritage missed a significant number of conditions identified by the genetic counselor.
A majority of participants found completing the family health history on Health Heritage not difficult and found it easy to create a family tree—i.e., to outline the family connections. Obtaining the information needed to complete the health history was more difficult.
Most participants were satisfied with the confidentiality and security of Health Heritage. Researchers reported the project results and the findings of the pilot study in the peer-reviewed Journal of the American Medical Informatics Association.