A model for understanding and affecting cancer genetics information seeking

Abstract

Health-related topics are relevant to a diverse array of people, which makes health information seeking a rich area in which to study how people look for information and to create interventions to aid in their searches. Cancer genetics is an important health context because information acquisition can positively impact an individual's morbidity and mortality while also affecting an individual's family network. However, this new field of research has created a complex information environment that is constantly evolving. Traditional methods of providing content through mass communication campaigns cannot keep pace. What is needed is a strategy that does not rely on perishable content, but instead helps people gain lifelong skills to find and assess cancer genetic information on their own. This article reviews the tenets of cancer information seeking—highlighting the growing public interest in genetics—and discusses how the burden of seeking health information has shifted to the patient. The authors introduce GENIS 2 (Genetic Information-Seeking Skills), which is an intervention framework for helping people build cancer genetic information-seeking skills that will be useful throughout their lives. GENIS 2 is based on the Comprehensive Model of Information Seeking (CMIS), which explores people's information-seeking actions by looking at the role played by demographics, experience, salience, and beliefs, as well as the information fields in which people exist. The CMIS is outlined and its stages are used to elucidate what kinds of cancer genetic information people are looking for in different situational contexts. The CMIS is also used as the framework for creating intervention strategies that information professionals can use to help coach people toward being more self-efficacious information seekers.