Health Information Technology (HIT) Enhanced Family History Documentation and Management in Primary Care

Growing evidence and understanding of an inherited component to several common, chronic
diseases has led to an increase in the importance of information about family health
history, and the integration of this information with other risk factors for common
diseases, like lifestyle risk factors. The US Preventive Services Task Force (USPSTF)
recommends the use of family health history as a routine genetic screening test for common
diseases, as obtaining a complete family health history is the first step to identifying
patients who are in need of intervention (e.g., intensive screening, lifestyle modification,
preventative therapies, genetic counseling). The importance of integrating family health
history with an individual's medical record will increase as our understanding of the genome
evolves because it will be more essential to put detailed personal genetic information into
a clinical context. Because of limited time during a typical primary care visit, and the
concerns of primary care providers (PCPs) about their self-efficacy of estimating and
providing guidance about risk, PCPs frequently do not obtain a family health history or
provide individualized risk assessment. These issues highlight the need to leverage
technology to collect these data independent of clinic visits, yet have these data
interoperate with an individual's electronic health record (EHR). Telephonic interactive
voice response systems (IVRS) and self-administered web-based tools are a low-cost,
sustainable way of reaching out to primary care populations, independent of a visit. We
propose to develop, implement, and evaluate a patient-reported, EHR-integrated personalized
risk assessment module to provide tailored disease risk and risk reduction information.

The Specific Aims of the proposed project are to: Aim 1: Develop a patient-reported,
EHR-integrated, personalized risk assessment module to provide tailored disease risk and
risk reduction information for four common diseases (breast cancer, colorectal cancer,
coronary heart disease, and type II diabetes) for the patient and his/ her PCP. Aim 2:
Measure the reach and effectiveness of this integrated risk assessment module by conducting
a cluster randomized controlled trial (RCT) of adult primary care patients in the Brigham
and Women's Primary Care Practice-Based Research Network. Aim 3: Evaluate facilitators and
barriers to the adoption and implementation of this integrated risk assessment module.

This project will further our understanding of how technology can be used to fill a gap in
current clinical practice by facilitating the systematic collection of family health history
and lifestyle risk factor data and integrating these data with an individual's EHR to
personalize care in a variety of settings and for diverse patient populations. This work
will use current national data standards for interoperability, and lessons learned from this
project will be exportable to healthcare settings throughout the United States.