Subscribe to RSS
DOI: 10.1055/a-2035-3008
Defining and Scoping Participatory Health Informatics: An eDelphi Study
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.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 makingAuthors' 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.
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/)
Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany
-
References
- 1 World Health Organization. WHO Global Strategy on Integrated People-Centred Health Services 2016–2026. Geneva, Switzerland: World Health Organization; 2015
- 2 Blobel B, Ruotsalainen P. Healthcare transformation towards personalized medicine - chances and challenges. Stud Health Technol Inform 2019; 261: 3-21
- 3 Kantor D, Bright JR, Burtchell J. Perspectives from the patient and the healthcare professional in multiple sclerosis: social media and participatory medicine. Neurol Ther 2018; 7 (01) 37-49
- 4 Cahill J. Patient participation–a review of the literature. J Clin Nurs 1998; 7 (02) 119-128
- 5 Wright MT, Springett J, Kongats K. What Is Participatory Health Research?. In: Wright MT, Kongats K. eds. Participatory Health Research. Cham, Switzerland: Springer International Publishing; 2018: 3-15
- 6 Martin-Sanchez F, Lopez-Campos G, Gray K. Biomedical informatics methods for personalized medicine and participatory health. In: Methods in Biomedical Informatics. Philadelphia, United States: Elsevier; 2014: 347-394
- 7 Melles M, Albayrak A, Goossens R. Innovating health care: key characteristics of human-centered design. Int J Qual Health Care 2021; 33 (Suppl. 01) 37-44
- 8 Frow P, McColl-Kennedy JR, Payne A. Co-creation practices: their role in shaping a health care ecosystem. Ind Mark Manage 2016; 56: 24-39
- 9 Eysenbach G. Consumer health informatics. BMJ 2000; 320 (7251): 1713-1716
- 10 Merolli M, Gray K, Martin-Sanchez F. TASoMe: validating a framework to generate evidence about health outcomes from social media use. Stud Health Technol Inform 2018; 247: 606-610
- 11 Denecke K, Gabarron E, Grainger R. et al. Artificial intelligence for participatory health: applications, impact, and future implications. Yearb Med Inform 2019; 28 (01) 165-173
- 12 Denecke K, Gabarron E, Petersen C, Merolli M. Defining participatory health informatics - a scoping review. Inform Health Soc Care 2021; 46 (03) 234-243
- 13 Wang K, Hambleton I, Linnander E. et al; ECHORN Writing Group. Toward reducing health information inequities in the Caribbean: our experience building a participatory health informatics project. Ethn Dis 2020; 30 (Suppl. 01) 193-202
- 14 Gabarron E, Rivera-Romero O, Miron-Shatz T, Grainger R, Denecke K. Role of participatory health informatics in detecting and managing pandemics: literature review. Yearb Med Inform 2021; 30 (01) 200-209
- 15 Denecke K, Bamidis P, Bond C. et al. Ethical issues of social media usage in healthcare. Yearb Med Inform 2015; 10 (01) 137-147
- 16 McKenna HP. The Delphi technique: a worthwhile research approach for nursing?. J Adv Nurs 1994; 19 (06) 1221-1225
- 17 Dalkey N, Helmer O. An experimental application of the DELPHI method to the use of experts. Manage Sci 1963; 9: 458-467
- 18 von der Gracht HA. Consensus measurement in Delphi studies. Technol Forecast Soc Change 2012; 79: 1525-1536
- 19 Jünger S, Payne SA, Brine J, Radbruch L, Brearley SG. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: recommendations based on a methodological systematic review. Palliat Med 2017; 31 (08) 684-706
- 20 WHO Guideline Recommendations on Digital Interventions for Health System Strengthening. Geneva, Switzerland: World Health Organization; 2019
- 21 World Health Organization. Monitoring and Evaluating Digital Health Interventions: A Practical Guide to Conducting Research and Assessment. Geneva, Switzerland: World Health Organization; 2016
- 22 Godinho MA, Ansari S, Guo GN, Liaw S-T. Toolkits for implementing and evaluating digital health: a systematic review of rigor and reporting. J Am Med Inform Assoc 2021; 28 (06) 1298-1307
- 23 World Health Organization. Global Strategy on Digital Health 2020–2025. Geneva, Switzerland: World Health Organization; 2021
- 24 Bath PA. Health informatics: current issues and challenges. J Inf Sci 2008; 34: 501-518
- 25 Lupton D. Digital Health: Critical and Cross-Disciplinary Perspectives. London, United Kingdom: Routledge; 2017
- 26 Haux R. Medical informatics: past, present, future. Int J Med Inform 2010; 79 (09) 599-610
- 27 Houston TK, Chang BL, Brown S, Kukafka R. Consumer health informatics: a consensus description and commentary from American Medical Informatics Association members. Proc AMIA Symp 2001; •••: 269-273
- 28 Cameron JD, Ramaprasad A, Syn T. An ontology of and roadmap for mHealth research. Int J Med Inform 2017; 100: 16-25
- 29 American Psychological Association. Society for Health Psychology. Accessed March 1, 2023 at: https://www.apa.org/about/division/div38
- 30 U.S. Food and Drug. Precision Medicine. 2018 . Accessed March 1, 2023 at: https://www.fda.gov/medical-devices/in-vitro-diagnostics/precision-medicine