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Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives.

ABSTRACT: OBJECTIVES:To identify the different ethical issues that should be considered in participatory health through social media from different stakeholder perspectives (i.e., patients/service users, health professionals, health information technology (If) professionals, and policy makers) in any healthcare context. METHODS:We implemented a two-round survey composed of open ended questions in the first round, aggregated into a list of ethical issues rated for importance by participants in the second round, to generate a ranked list of possible ethical issues in participatory health based on healthcare professionals' and policy makers' opinions on both their own point of view and their beliefs for other stakeholders' perspectives. RESULTS:Twenty-six individuals responded in the first round of the survey. Multiple ethical issues were identified for each perspective. Data privacy, data security, and digital literacy were common themes in all perspectives. Thirty-three individuals completed the second round of the survey. Data privacy and data security were ranked among the three most important ethical issues in all perspectives. Quality assurance was the most important issue from the healthcare professionals' perspective and the second most important issue from the patients' perspective. Data privacy was the most important consideration for patients/service users. Digital literacy was ranked as the fourth most important issue, except for policy makers' perspective. CONCLUSIONS:Different stakeholders' opinions fairly agreed that there are common ethical issues that should be considered across the four groups (patients, healthcare professionals, health IT professionals, policy makers) such as data privacy, security, and quality assurance.

SUBMITTER: Rivera-Romero O

PROVIDER: S-EPMC7442531 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives.

Rivera-Romero Octavio O Konstantinidis Stathis S Denecke Kerstin K Gabarrón Elia E Petersen Carolyn C Househ Mowafa M Merolli Mark M Mayer Miguel Ángel MÁ

Yearbook of medical informatics 20200417 1

<h4>Objectives</h4>To identify the different ethical issues that should be considered in participatory health through social media from different stakeholder perspectives (i.e., patients/service users, health professionals, health information technology (If) professionals, and policy makers) in any healthcare context.<h4>Methods</h4>We implemented a two-round survey composed of open ended questions in the first round, aggregated into a list of ethical issues rated for importance by participants ...[more]

PMID: 32303101

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Project description:Objectives: We aimed to elucidate public values regarding the use of genomics to improve vaccine development and use (vaccinomics).Methods: Adults ≥18 years-old were recruited through social media and community organizations, and randomly assigned to one of four nested discussion groups in Boulder, CO and Baltimore, MD. Participants rated their confidence in vaccine safety and effectiveness prior to and after discussing vaccinomics. Before departing, they prioritized funding for vaccinomics versus federal priorities (vaccine safety and efficacy, new vaccines, and free vaccines) and chronic diseases (cancer, heart disease, and diabetes). Grounded Theory-influenced methods were used to identify themes.Results: Participants broadly supported vaccinomics. Emergent themes: concerns about reduced privacy/confidentiality, increased genetically based stigma/discrimination, and reduced agency to make vaccine-related decisions through genetically based prioritization. Participants supported vaccinomics' potential for increased personalization. Some participants favored prioritizing others over themselves during a vaccine shortage, while others did not. Some participants worried health insurance companies would discriminate against them based on information discovered through vaccinomics. Participants feared inequitable implementation of vaccinomics would contribute to discrimination and marginalization of vulnerable populations. Discussing vaccinomics did not impact perceptions of vaccine safety and effectiveness. Federal funding for vaccinomics was broadly supported.Conclusion: Participants supported vaccinomics' potential for increased personalization, noting policy safeguards to facilitate equitable implementation and protect privacy were needed. Despite some concerns, participants hoped vaccinomics would improve vaccine safety and effectiveness. Policies regarding vaccinomics' implementation must address public concerns about the privacy and confidentiality of genetic information and potential inequities in access to vaccinomics' benefits.

Project description:BackgroundTerms and conditions define the relationship between social media companies and users. However, these legal agreements are long and written in a complex language. It remains questionable whether users understand the terms and conditions and are aware of the consequences of joining such a network. With children from a young age interacting with social media, companies are acquiring large amounts of data, resulting in longitudinal data sets that most researchers can only dream of. The use of social media by children is highly relevant to their mental and physical health for 2 reasons: their health can be adversely affected by social media and their data can be used to conduct health research.ObjectiveThe aim of this paper is to offer an ethical analysis of how the most common social media apps and services inform users and obtain their consent regarding privacy and other issues and to discuss how lessons from research ethics can lead to trusted partnerships between users and social media companies. Our paper focuses on children, who represent a sensitive group among users of social media platforms.MethodsA thematic analysis of the terms and conditions of the 20 most popular social media platforms and the 2 predominant mobile phone ecosystems (Android and iOS) was conducted. The results of this analysis served as the basis for scoring these platforms.ResultsThe analysis showed that most platforms comply with the age requirements issued by legislators. However, the consent process during sign-up was not taken seriously. Terms and conditions are often too long and difficult to understand, especially for younger users. The same applies to age verification, which is not realized proactively but instead relies on other users who report underaged users.ConclusionsThis study reveals that social media networks are still lacking in many respects regarding the adequate protection of children. Consent procedures are flawed because they are too complex, and in some cases, children can create social media accounts without sufficient age verification or parental oversight. Adopting measures based on key ethical principles will safeguard the health and well-being of children. This could mean standardizing the registration process in accordance with modern research ethics procedures: give users the key facts that they need in a format that can be read easily and quickly, rather than forcing them to wade through chapters of legal language that they cannot understand. Improving these processes would help safeguard the mental health of children and other social media users.

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Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives.

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Ethical Considerations for Participatory Health through Social Media: Healthcare Workforce and Policy Maker Perspectives.

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