Defining and scoping participatory health informatics - an eDelphi study

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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.authorLópez-Campos, Guillermo
dc.contributor.authorMartín-Sánchez, Fernando
dc.contributor.authorMckillop, Mollie
dc.contributor.authorMerolli, Mark
dc.contributor.authorMiron-Shatz, Talya
dc.contributor.authorTrigo Vilaseca, Jesús Daniel
dc.contributor.authorWright, Graham
dc.contributor.authorWynn, Rolf
dc.contributor.authorHullin, Carol
dc.contributor.authorGabarron, Elia
dc.contributor.departmentIngeniería Eléctrica, Electrónica y de Comunicaciónes_ES
dc.contributor.departmentInstitute of Smart Cities - ISCen
dc.contributor.departmentIngeniaritza Elektrikoa, Elektronikoaren eta Telekomunikazio Ingeniaritzareneu
dc.date.accessioned2023-11-09T07:31:45Z
dc.date.available2023-11-09T07:31:45Z
dc.date.issued2023
dc.date.updated2023-11-09T07:17:48Z
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. 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.en
dc.description.sponsorshipO.R.-R. has received funding from the Universidad de Sevilla and the Ministerio de Universidades of the Spanish Government under the call “Recualificación del Sistema Español de Universidades” funded by European Union – NextGenerationEU.en
dc.format.mimetypeapplication/pdfen
dc.identifier.citationDenecke, K., Romero, O. R., Petersen, C., Benham-Hutchins, M., Cabrer, M., Davies, S., Grainger, R., Hussein, R., Lopez-Campos, G., Martin-Sanchez, F., McKillop, M., Merolli, M., Miron-Shatz, T., Trigo, J. D., Wright, G., Wynn, R., Hullin Lucay Cossio, C., & Gabarron, E. (2023). Defining and scoping participatory health informatics: An edelphi study. Methods of Information in Medicine, 62(03/04), 090-099. https://doi.org/10.1055/a-2035-3008en
dc.identifier.doi10.1055/a-2035-3008
dc.identifier.issn0026-1270
dc.identifier.urihttps://academica-e.unavarra.es/handle/2454/46732
dc.language.isoengen
dc.publisherGeorg Thieme Verlagen
dc.relation.ispartofMethods of Information in Medicine, 62(03/04), 090-099en
dc.relation.publisherversionhttps://doi.org/10.1055/a-2035-3008
dc.rights© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial-License,en
dc.rights.accessRightsinfo:eu-repo/semantics/openAccess
dc.rights.urihttps://creativecommons.org/licenses/by-nc-nd/4.0/
dc.subjectParticipatory health informaticsen
dc.subjectDelphi studyen
dc.subjectSocial mediaen
dc.subjectMHealthen
dc.subjectShared decision makingen
dc.titleDefining and scoping participatory health informatics - an eDelphi studyen
dc.typeinfo:eu-repo/semantics/article
dc.type.versioninfo:eu-repo/semantics/publishedVersion
dspace.entity.typePublication
relation.isAuthorOfPublication92c20ba0-e062-4195-9962-5a0111a7e879
relation.isAuthorOfPublication.latestForDiscovery92c20ba0-e062-4195-9962-5a0111a7e879

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