Dataset Information

Defining and Scoping Participatory Health Informatics: An eDelphi Study.

ABSTRACT:

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.

SUBMITTER: Denecke K

PROVIDER: S-EPMC10462430 | biostudies-literature | 2023 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Defining and Scoping Participatory Health Informatics: An eDelphi Study.

Denecke Kerstin K Romero Octavio Rivera OR Petersen Carolyn C Benham-Hutchins Marge M Cabrer Miguel M Davies Shauna S Grainger Rebecca R Hussein Rada R Lopez-Campos Guillermo G Martin-Sanchez Fernando F McKillop Mollie M Merolli Mark M Miron-Shatz Talya T Trigo Jesús Daniel JD Wright Graham G Wynn Rolf R Hullin Lucay Cossio Carol C Gabarron Elia E

Methods of information in medicine 20230214 3-04

<h4>Background</h4>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.<h4>Objective</h4>Thi ...[more]

PMID: 36787885

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Dataset Information

Defining and Scoping Participatory Health Informatics: An eDelphi Study.

Background

Objective

Methods

Results

Discussion

Conclusion

Publications

Defining and Scoping Participatory Health Informatics: An eDelphi Study.

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