Exploring patients' health information communication practices with social network members as a foundation for consumer health IT design

BACKGROUND There is a need to ensure that the growing number of consumer health information technologies designed to support patient engagement account for the larger social context in which health is managed. Basic research on how patients engage this larger social context is needed as a precursor to the development of patient-centered consumer health information technology (IT) solutions. PURPOSE The purpose of this study was to inform the broader design of consumer health IT by characterizing patients' existing health information communication practices with their social network members. METHODS This qualitative study took place between 2010 and 2012 in a Midwestern city. Eighteen patients with chronic conditions participated in a semi-structured interview that was analyzed using qualitative content analysis and descriptive statistics. Emphasis was placed on recruiting a sample representing diverse cultural groups and including participants of low socioeconomic status. RESULTS Participants' social networks included a wide range of individuals, spanning biological relatives, divinities, and second-degree relationships. Participants' rationales for health information communication reflected seven themes: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the message, (5) orientation of the goal, (6) dimensions of the context, and (7) adaptive practices. CONCLUSIONS This study demonstrates that patients' health information communication practices are multidimensional, engaging individuals beyond formal and informal caregivers and driven by characteristics of their personal lives and larger social contexts in addition to their health problem. New models of consumer health IT must be created to better align with the realities of patients' communication routines.