The issue: There are very few published studies showing the impact of family history based interventions on reduction of risk behaviors and prevention of disease. The types of prevention strategies that should be assessed include behavioral and lifestyle interventions as well as screening practices. This research is critical to the development of new policies and practice guidelines that incorporate family history.

Purpose of the session: To initiate a working group that would begin a systematic, evidence-based process for assessing the health impact of disease prevention strategies using family history. The specific task for the current breakout session is to define the problem, brainstorm about possible solutions or processes to begin to address the problem, and identify key players and organizations that should be part of an ongoing workgroup.

Notes from breakout session:

A. Define the problem – The group began by identifying the need for prospective longitudinal studies to measure the impact of familial risk and risk-based interventions on disease occurrence. Challenges to such studies include how to measure the effects of 1) genotype vs. environment and 2) lifestyle vs. screening interventions, on disease risk. Potential barriers to identifying and screening those at-risk, such as health disparities, access to medical care, and cost-effectiveness of screening must be considered. Benefits and harms to relatives of family history based risk assessment and interventions also need to be measured.

The following framework was proposed for considering the impact of familial risk assessment on specific outcome measurements such as decreased morbidity and mortality and quality of life (QoL).

 

B. Many of the proposed solutions involved implementing system changes, including reimbursing health care professionals for preventative care, standardizing data collection and risk assessment methods, and incorporating family history into electronic medical records with pop-up screens indicating recommended screenings/interventions. Other suggestions included better dissemination of results of studies involving the impact of family history on health outcomes, engaging faith-based and other communities in applying interventions, educating consumers and providers through the media and other means, and applying lessons learned from existing evidence for preventive strategies that are not family-history based.