Kerstin Denecke, Elia Gabarron, Carolyn Petersen, Mark Merolli
{"title":"Defining participatory health informatics - a scoping review.","authors":"Kerstin Denecke, Elia Gabarron, Carolyn Petersen, Mark Merolli","doi":"10.1080/17538157.2021.1883028","DOIUrl":null,"url":null,"abstract":"<p><p>Healthcare has been shifting toward individuals participating in decision-making and empowered to be active in their treatment, and health monitoring. The term \"participatory health informatics\" (PHI) started to appear in literature. A clear definition of PHI is missing, and facets of PHI still have to be shaped. The objective of this paper is to offer a definition of PHI considering themes and technologies that make healthcare participatory. We searched Pubmed, ACM Digital Library, IEEE Xplore, EMBASE, and conference proceedings for articles that reported about use of information technology or informatics in the context of PHI. We performed qualitative synthesis and reported summary statistics. 39 studies were eligible after screening 382 titles and abstracts and reviewing 82 full texts. The top 5 person-centered key themes related to PHI included empowerment, decision-making, informed patient, collaboration, and disease management. Finally, we propose to define PHI as multidisciplinary field that uses information technology as provided through the web, smartphones, or wearables to increase participation of individuals in their care process and to enable them in self-care and shared decision-making. Goals to be achieved through PHI include maintaining health and well-being; improving the healthcare system and health outcomes; sharing experiences; achieving life goals; and self-education.</p>","PeriodicalId":54984,"journal":{"name":"Informatics for Health & Social Care","volume":"46 3","pages":"234-243"},"PeriodicalIF":2.5000,"publicationDate":"2021-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Informatics for Health & Social Care","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/17538157.2021.1883028","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2021/2/23 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Healthcare has been shifting toward individuals participating in decision-making and empowered to be active in their treatment, and health monitoring. The term "participatory health informatics" (PHI) started to appear in literature. A clear definition of PHI is missing, and facets of PHI still have to be shaped. The objective of this paper is to offer a definition of PHI considering themes and technologies that make healthcare participatory. We searched Pubmed, ACM Digital Library, IEEE Xplore, EMBASE, and conference proceedings for articles that reported about use of information technology or informatics in the context of PHI. We performed qualitative synthesis and reported summary statistics. 39 studies were eligible after screening 382 titles and abstracts and reviewing 82 full texts. The top 5 person-centered key themes related to PHI included empowerment, decision-making, informed patient, collaboration, and disease management. Finally, we propose to define PHI as multidisciplinary field that uses information technology as provided through the web, smartphones, or wearables to increase participation of individuals in their care process and to enable them in self-care and shared decision-making. Goals to be achieved through PHI include maintaining health and well-being; improving the healthcare system and health outcomes; sharing experiences; achieving life goals; and self-education.
期刊介绍：
Informatics for Health & Social Care promotes evidence-based informatics as applied to the domain of health and social care. It showcases informatics research and practice within the many and diverse contexts of care; it takes personal information, both its direct and indirect use, as its central focus.
The scope of the Journal is broad, encompassing both the properties of care information and the life-cycle of associated information systems.
Consideration of the properties of care information will necessarily include the data itself, its representation, structure, and associated processes, as well as the context of its use, highlighting the related communication, computational, cognitive, social and ethical aspects.
Consideration of the life-cycle of care information systems includes full range from requirements, specifications, theoretical models and conceptual design through to sustainable implementations, and the valuation of impacts. Empirical evidence experiences related to implementation are particularly welcome.
Informatics in Health & Social Care seeks to consolidate and add to the core knowledge within the disciplines of Health and Social Care Informatics. The Journal therefore welcomes scientific papers, case studies and literature reviews. Examples of novel approaches are particularly welcome. Articles might, for example, show how care data is collected and transformed into useful and usable information, how informatics research is translated into practice, how specific results can be generalised, or perhaps provide case studies that facilitate learning from experience.
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