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CC BY-NC-ND 4.0 · Methods Inf Med 2023; 62(03/04): 090-099
DOI: 10.1055/a-2035-3008
Original Article for a Focus Theme

Defining and Scoping Participatory Health Informatics: An eDelphi Study

Kerstin Denecke
1   Bern University of Applied Sciences, Department Engineering and Computer Science, Institute for Medical Informatics, Bern, Switzerland
,
Octavio Rivera Romero
2   Instituto de Ingeniería Informática (I3US), Universidad de Sevilla, Sevilla, Spain
3   Department of Electronic Technology, Universidad de Sevilla, Sevilla, Spain
,
Carolyn Petersen
4   Mayo Clinic, Rochester, Minnesota, United States
,
Marge Benham-Hutchins
5   College of Nursing and Health Sciences, Texas A&M University Corpus Christi, Texas, Corpus Christi, United States
,
Miguel Cabrer
6   eHealth Expert and Idonia Founder, Mallorca, Spain
,
Shauna Davies
7   Faculty of Nursing, University of Regina, Regina, SK, Canada
,
Rebecca Grainger
8   Department of Medicine, University of Otago, Wellington, New Zealand
,
Rada Hussein
9   Ludwig Boltzmann Institute for Digital Health and Prevention, Salzburg, Austria
,
Guillermo Lopez-Campos
10   Wellcome-Wolfson Institute for Experimental Medicine, Queen's University Belfast, Belfast, United Kingdom
,
Fernando Martin-Sanchez
11   Digital Health Programme, Instituto de Salud Carlos III, Madrid, Spain
,
Mollie McKillop
12   IBM Corporation, New York, United States
,
Mark Merolli
13   Department of Physiotherapy, School of Health Sciences, the University of Melbourne, Melbourne, Australia
14   Centre for Digital Transformation of Health, The University of Melbourne, Melbourne, Australia
,
Talya Miron-Shatz
15   Faculty of Business Administration, Ono Academic College, Kiryat Ono, Israel
,
Jesús Daniel Trigo
16   Department of Electrical, Electronic and Communications Engineering, Public University of Navarra, Institute of Smart Cities (ISC), Navarra Institute for Health Research (IdiSNA), Pamplona, Spain
,
Graham Wright
17   Department of Information Systems, Rhodes University, Grahamstown, South Africa
,
Rolf Wynn
18   Department of Clinical Medicine, UiT The Arctic University of Norway, Tromsø, Norway
,
Carol Hullin Lucay Cossio
19   Data Governance Manager, Victoria Legal Aid, Melbourne, Australia
20   College Economy & Business, The University of Tasmania, Tasmania, Australia
21   Digital Innovation Centre for Latinoamerican Region, Temuco, Chile
,
Elia Gabarron
22   Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway
23   Department of Education, ICT and Learning, Østfold University College, Halden, Norway
› Author Affiliations Funding O.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.
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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.

Keywords

participatory health informatics - Delphi study - social media - mHealth - shared decision making

Authors' Contribution

Conceptualization: K.D., E.G., C.P.; Methodology: K.D., E.G., O.R.R., C.P.; Distribution of questionnaire: K.D.; Analysis of results: K.D., O.R.R.; Formal analysis and data curation: K.D., E.G., O.R.R., C.P.; Writing—original draft preparation: K.D., E.G., O.R.R., C.P.; Writing—review and editing: All authors; Answering Delphi questionnaire: T.M.-S., M.M., S.D., R.G., M.B.-H., R.W., F.M.-S., G.L.-C., M.G., J.D.T. G.W., R.H., M.M., C.H.


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


Supplementary Material



Publication History

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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