Defining and Scoping Participatory Health Informatics - An eDelphi Study

Denecke, Kerstin; Rivera-Romero, Octavio; Petersen, Carolyn; Benham-Hutchins, Marge; Cabrer, Miguel; Davies, Shauna; Grainger, Rebecca; Hussein, Rada; Campos, Guillermo Lopez; Martin-Sanchez, Fernando J; McKillop, Mollie; Merolli, Mark; Miron-Shatz, Talya; Trigo, Jesús Daniel; Wright, Graham; Wynn, Rolf; Hullin, Carol; Gabarron, Elia (2023). Defining and Scoping Participatory Health Informatics - An eDelphi Study Methods of Information in Medicine, 62(03/04), 090-099. Georg Thieme Verlag 10.1055/a-2035-3008

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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 technologyand 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.

Item Type:	Journal Article (Original Article)
Division/Institute:	School of Engineering and Computer Science > Institute for Patient-centered Digital Health School of Engineering and Computer Science
Name:	Denecke, Kerstin0000-0001-6691-396X; Rivera-Romero, Octavio; Petersen, Carolyn; Benham-Hutchins, Marge; Cabrer, Miguel; Davies, Shauna; Grainger, Rebecca; Hussein, Rada; Campos, Guillermo Lopez; Martin-Sanchez, Fernando J; McKillop, Mollie; Merolli, Mark; Miron-Shatz, Talya; Trigo, Jesús Daniel; Wright, Graham; Wynn, Rolf; Hullin, Carol and Gabarron, Elia
Subjects:	Q Science > Q Science (General) R Medicine > R Medicine (General)
ISSN:	0026-1270
Publisher:	Georg Thieme Verlag
Language:	English
Submitter:	Kerstin Denecke
Date Deposited:	24 Feb 2023 11:00
Last Modified:	25 Oct 2023 13:44
Publisher DOI:	10.1055/a-2035-3008
ARBOR DOI:	10.24451/arbor.18858
URI:	https://arbor.bfh.ch/id/eprint/18858