Defining and Scoping Participatory Health Informatics: An eDelphi Study

Abstract

Background: Health care has evolved to support the involvement of individuals in decision making by, for example, using mobile apps and wearables that may help empower people to actively participate in their treatment and health monitoring. While the term "participatory health informatics" (PHI) has emerged in literature to describe these activities, along with the use of social media for health purposes, the scope of the research field of PHI is not yet well defined. Objective: To propose a preliminary definition of PHI and define the scope of the field. Methods: We used an adapted Delphi study design to gain consensus from participants on a definition developed from a previous review of literature. From the literature we derived a set of attributes describing PHI as comprising 18 characteristics, 14 aims, and 4 relations. We invited researchers, health professionals, and health informaticians to score these characteristics and aims of PHI and their relations to other fields over three survey rounds. In the first round participants were able to offer additional attributes for voting. Results: The first round had 44 participants, with 28 participants participating in all three rounds. These 28 participants were gender-balanced and comprised participants from industry, academia, and health sectors from all continents. Consensus was reached on 16 characteristics, 9 aims, and 6 related fields. Discussion: The consensus reached on attributes of PHI describe PHI as a multidisciplinary field that uses information technology and delivers tools with a focus on individual-centered care. It studies various effects of the use of such tools and technology. Its aims address the individuals in the role of patients, but also the health of a society as a whole. There are relationships to the fields of health informatics, digital health, medical informatics, and consumer health informatics. Conclusion: We have proposed a preliminary definition, aims, and relationships of PHI based on literature and expert consensus. These can begin to be used to support development of research priorities and outcomes measurements.

Current Trends and New Approaches in Participatory Health Informatics

“…Participatory Health Informatics (PHI) has still not been well defined and scoped. Denecke et al 12 addressed this issue and conducted an eDelphi study to develop a definition of PHI and to scope the field of PHI. They conceived PHI as an interdisciplinary domain that harnesses information technology to address medical conditions while scrutinizing the consequences of utilizing these technological tools.…”

How Participatory Health Informatics Catalyzes One Digital Health

“…PHI is "a multidisciplinary field that is applied to medical conditions, uses information technology, and studies the effects of the use of tools. PHI provides resources and delivers tools supporting active participation, and focuses on individual-centered care, individual-centered self-management, and individual-centered decision making" [7]. One Digital Health (ODH) is a framework aimed at facilitating and improving collaboration among practitioners in OH and digital health communities.…”