Journal
METHODS OF INFORMATION IN MEDICINE
Volume 62, Issue 03/04, Pages 90-99Publisher
GEORG THIEME VERLAG KG
DOI: 10.1055/a-2035-3008
Keywords
participatory health informatics; Delphi study; social media; mHealth; shared decision making
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This article proposes a preliminary definition of participatory health informatics (PHI) and defines the scope of the field through an adapted Delphi study design. Consensus was reached on 16 characteristics, 9 aims, and 6 related fields of PHI through three survey rounds and expert consensus.
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 This article proposes a preliminary definition of PHI and defines 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.
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