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dc.contributor.authorDenecke, Kerstin
dc.contributor.authorRivera-Romero, Octavio
dc.contributor.authorPetersen, Carolyn
dc.contributor.authorBenham-Hutchins, Marge
dc.contributor.authorCabrer, Miguel
dc.contributor.authorDavies, Shauna
dc.contributor.authorGrainger, Rebecca
dc.contributor.authorHussein, Rada
dc.contributor.authorLopez Campos, Guillermo
dc.contributor.authorMartin-Sanchez, Fernando J.
dc.contributor.authorMcKillop, Molle
dc.contributor.authorMerolli, Mark
dc.contributor.authorMiron-Shatz, Talya
dc.contributor.authorTrigo, Jesús Daniel
dc.contributor.authorWright, Graham
dc.contributor.authorWynn, Rolf
dc.contributor.authorHullin, Carola
dc.contributor.authorGabarron, Elia
dc.date.accessioned2023-08-21T11:05:50Z
dc.date.available2023-08-21T11:05:50Z
dc.date.issued2023-03-14
dc.description.abstractBackground - 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.<p> <p>Objective - This article proposes a preliminary definition of PHI and defines the scope of the field.<p> <p>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.<p> <p>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.<p> <p>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.<p> <p>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.en_US
dc.identifier.citationDenecke K, Rivera-Romero O, Petersen C, Benham-Hutchins, Cabrer, Davies, Grainger R, Hussein R, Lopez Campos, Martin-Sanchez, McKillop, Merolli M, Miron-Shatz T, Trigo, Wright G, Wynn R, Hullin C, Gabarron E. Defining and Scoping Participatory Health Informatics - An eDelphi Study. Methods of Information in Medicine. 2023
dc.identifier.cristinIDFRIDAID 2126164
dc.identifier.doi10.1055/a-2035-3008
dc.identifier.issn0026-1270
dc.identifier.urihttps://hdl.handle.net/10037/30119
dc.language.isoengen_US
dc.publisherThieme Gruppeen_US
dc.relation.journalMethods of Information in Medicine
dc.rights.holderCopyright 2023 The Author(s)en_US
dc.rights.urihttps://creativecommons.org/licenses/by-nc-nd/4.0en_US
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)en_US
dc.titleDefining and Scoping Participatory Health Informatics - An eDelphi Studyen_US
dc.type.versionpublishedVersionen_US
dc.typeJournal articleen_US
dc.typeTidsskriftartikkelen_US
dc.typePeer revieweden_US


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Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)
Except where otherwise noted, this item's license is described as Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)