Kerstin Denecke, Octavio Rivera Romero, Carolyn Petersen, Marge Benham-Hutchins, Miguel Cabrer, Shauna Davies, Rebecca Grainger, Rada Hussein, Guillermo Lopez-Campos, Fernando Martin-Sanchez, Mollie McKillop, Mark Merolli, Talya Miron-Shatz, Jesús Daniel Trigo, Graham Wright, Rolf Wynn, Carol Hullin Lucay Cossio, Elia Gabarron
{"title":"参与式健康信息学的定义和范围:一项爱德菲研究。","authors":"Kerstin Denecke, Octavio Rivera Romero, Carolyn Petersen, Marge Benham-Hutchins, Miguel Cabrer, Shauna Davies, Rebecca Grainger, Rada Hussein, Guillermo Lopez-Campos, Fernando Martin-Sanchez, Mollie McKillop, Mark Merolli, Talya Miron-Shatz, Jesús Daniel Trigo, Graham Wright, Rolf Wynn, Carol Hullin Lucay Cossio, Elia Gabarron","doi":"10.1055/a-2035-3008","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>This article proposes a preliminary definition of PHI and defines the scope of the field.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Discussion: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":49822,"journal":{"name":"Methods of Information in Medicine","volume":"62 3-04","pages":"90-99"},"PeriodicalIF":1.3000,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/67/87/10-1055-a-2035-3008.PMC10462430.pdf","citationCount":"1","resultStr":"{\"title\":\"Defining and Scoping Participatory Health Informatics: An eDelphi Study.\",\"authors\":\"Kerstin Denecke, Octavio Rivera Romero, Carolyn Petersen, Marge Benham-Hutchins, Miguel Cabrer, Shauna Davies, Rebecca Grainger, Rada Hussein, Guillermo Lopez-Campos, Fernando Martin-Sanchez, Mollie McKillop, Mark Merolli, Talya Miron-Shatz, Jesús Daniel Trigo, Graham Wright, Rolf Wynn, Carol Hullin Lucay Cossio, Elia Gabarron\",\"doi\":\"10.1055/a-2035-3008\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>This article proposes a preliminary definition of PHI and defines the scope of the field.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Discussion: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":49822,\"journal\":{\"name\":\"Methods of Information in Medicine\",\"volume\":\"62 3-04\",\"pages\":\"90-99\"},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2023-09-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/67/87/10-1055-a-2035-3008.PMC10462430.pdf\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Methods of Information in Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1055/a-2035-3008\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"COMPUTER SCIENCE, INFORMATION SYSTEMS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Methods of Information in Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1055/a-2035-3008","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"COMPUTER SCIENCE, INFORMATION SYSTEMS","Score":null,"Total":0}
Defining and Scoping Participatory Health Informatics: An eDelphi Study.
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.
期刊介绍：
Good medicine and good healthcare demand good information. Since the journal''s founding in 1962, Methods of Information in Medicine has stressed the methodology and scientific fundamentals of organizing, representing and analyzing data, information and knowledge in biomedicine and health care. Covering publications in the fields of biomedical and health informatics, medical biometry, and epidemiology, the journal publishes original papers, reviews, reports, opinion papers, editorials, and letters to the editor. From time to time, the journal publishes articles on particular focus themes as part of a journal''s issue.
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