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.

Conceptualization: Denecke, Gabarron, Rivera Romero, Petersen; Methodology: Denecke, Gabarron, Rivera Romero, Petersen; Distribution of questionnaire: Denecke; Analysis of results: Denecke, Rivera Romero; Formal analysis and data curation: Denecke, Gabarron, Rivera Romero, Petersen; Writing—original draft preparation: Denecke, Gabarron, Rivera Romero, Petersen; Writing—review and editing: All authors; Answering Delphi questionnaire: Miron-Shatz, Merolli, Davies, Grainger, Benham-Hutchins, Wynn, Martin-Sanchez, Lopez Campos, Cabrer, Trigo, Wright, Hussein, McKillop, Hullin.

All authors have read and agreed to the published version of the manuscript.

Received: 22 July 2022

Accepted: 08 October 2022

Accepted Manuscript online:
14 February 2023

Article published online:
14 March 2023

© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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