'Family informatics' by Enrico Coiera, Kathleen Yin, Roneel V Sharan, Saba Akbar, Satya Vedantam, Hao Xiong, Jenny Waldie and Annie Y S Lau in (2022) 29(7) Journal of the American Medical Informatics Association 1310–1315 comments
While families have a central role in shaping individual choices and behaviors, healthcare largely focuses on treating individuals or supporting self-care. However, a family is also a health unit. We argue that family informatics is a necessary evolution in scope of health informatics. To deal with the needs of individuals, we must ensure technologies account for the role of their families and may require new classes of digital service. Social networks can help conceptualize the structure, composition, and behavior of families. A family network can be seen as a multiagent system with distributed cognition. Digital tools can address family needs in (1) sensing and monitoring; (2) communicating and sharing; (3) deciding and acting; and (4) treating and preventing illness. Family informatics is inherently multidisciplinary and has the potential to address unresolved chronic health challenges such as obesity, mental health, and substance abuse, support acute health challenges, and to improve the capacity of individuals to manage their own health needs.
The authors state
A family is a network of individuals that may share obligations, needs, behaviors, routines, and rituals that can shape individual health choices. Family members may have a shared genetic, environmental, or socioeconomic context and together have emergent needs that may supersede those of the individual.
Healthcare services in the main focus on the needs of individuals and see families as a support mechanism for the individual. Families for example can have a collective responsibility for managing geriatric, pediatric, and mental health conditions of their members. However, a family itself is a health unit, and different families exhibit different degrees of ‘health’. Serious illness in one family member may create psychological burden on others. In a pandemic, one infected family member may force all to isolate with heightened risk of infection. Resource- or time-poor families may put collective needs (such as securing financial income) above any impact on the health of individuals. Family coping styles such as adaptability may contribute to positive health outcomes for family members but some family behaviors can be obstructive and create barriers to health management. Family influences may affect the management of acute and chronic conditions, and play a significant role in preventative health.
There is a similar focus on individuals in health informatics. Information services typically support individual clinician decision making about individual patients or populations. Consumer informatics also mainly focuses on supporting the health needs of individuals through self-care. While there has been early and promising attention paid to understanding the information needs of families, it is still largely ignored by the mainstream.
In this paper, we argue that family informatics is a necessary evolution in the scope of health informatics. If we are to comprehensively deal with the health needs of individuals, we must ensure our technologies account for and exploit the role of families. If we are to address the unique health needs of families, we may need new classes of digital service.
To better understand these opportunities, we use the lens of social networks to conceptualize the structure, composition, and behavior of families. We examine the unique tasks that fall to families and describe possible categories of family-focused digital interventions that could meet these needs.
