Balancing Between Privacy and Patient Needs for Health Information in the Age of Participatory Health and Social Media: A Scoping Review

Househ, Mowafa; Grainger, Rebecca; Petersen, Carolyn; Bamidis, Panagiotis D.; Merolli, Mark

doi:10.1055/s-0038-1641197

Cited by 43 publications

(48 citation statements)

References 69 publications

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“…Disadvantages of the use of social media involve potential information overload, possible security breaches that could lead to a disclosure of donors' personal information, and, in some cases, lack of privacy [51]. Moreover, the use of social media can be influenced by factors such as age, personality, literacy level, and cognitive abilities [52]. Therefore, although social media can improve the process of donor's information, they should rather play a complementary and not the main role in the process.…”

Section: Discussionmentioning

confidence: 99%

Donor information in research and drug evaluation with induced pluripotent stem cells (iPSCs)

Orzechowski¹,

Schochow²,

Kühl

et al. 2020

Stem Cell Res Ther

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Background: The discovery of induced pluripotent stem cells (iPSCs) opened the possibilities for reprogramming cells back to a pluripotent state. Because of no apparent ethical issues connected with donation and derivation of biomaterial, iPSCs are considered as a research alternative to ethically highly disputed human embryonic stem cells (hESCs). However, the unique character of iPSCs leads to numerous ethical considerations, which mainly concern the issue of donor information and consent for the use of biospecimen in research and drug evaluation. Methods: For the purpose of this analysis, we conducted a review of the literature in the PubMed/MEDLINE and Web of Science databases. The search algorithm led to the identification of 1461 results. After removing duplicates and screening of title and abstract, 90 articles were found to be relevant to the study's objective. Full texts of these articles were apprised and 62 articles were excluded at this step for not properly addressing the study's objective. In the final step, 28 articles were included in the analysis. Analyzed were both research and non-research manuscripts published in peer-reviewed journals. Results: In the case of iPSC research, the information process should be guided by general frameworks established for research on human subjects but also by specific characteristics of iPSCs. We determined four main domains and 12 thematic subdomains that should be included in donor information. Our results show that majority of authors agree to the content of information with regard to the areas of general information, storage of cells, and protection of privacy. Two main issues that are discussed in the literature are donor's consent for use in future studies and the process of donor information. Conclusions: Given the unique character of iPSCs and the possibility of their various uses in the future, the content of donor information should contain specific information central to iPSC research. Effective methods of communicating information to donors should combine written and oral information with the possible use of multimedia.

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Section: Discussionmentioning

confidence: 99%

Donor information in research and drug evaluation with induced pluripotent stem cells (iPSCs)

Orzechowski¹,

Schochow²,

Kühl

et al. 2020

Stem Cell Res Ther

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“…Fully successful implementation also requires incorporation of patient viewpoints [39-41]. For example, patient engagement is necessary to ensure that these tools strike the right balance between providing patients’ information and protecting their privacy [42]. Technology developers and health system leaders tasked with implementing and evaluating new tools need a robust process that incorporates all key stakeholders, including patients [39-41].…”

Section: Discussionmentioning

confidence: 99%

A Rapid Process for Identifying and Prioritizing Technology-Based Tools for Health System Implementation

et al. 2018

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BackgroundHealth system decisions to put new technologies into clinical practice require a rapid and trustworthy decision-making process informed by best evidence.ObjectiveThis study aimed to present a rapid evidence review process that can be used to inform health system leaders and clinicians seeking to implement new technology tools to improve patient-clinician decision making and patient-oriented outcomes.MethodsThe rapid evidence review process we pioneered involved 5 sequential subprocesses: (1) environmental scan, (2) expert panel recruitment, (3) host evidence review panel, (4) analysis, and (5) local validation panel. We conducted an environmental scan of health information technology (IT) literature to identify relevant digital tools in oncology care. We synthesized the recent literature using current evidence review methods, creating visual summaries for use by a national panel of experts. Panelists were taken through a 6-hour modified Delphi process to prioritize tools for implementation. Findings from the rapid evidence review panel were taken to a local validation panel for further rapid review during a 3-hour session.ResultsOur rapid evidence review process shows promise for informing decision making by reducing the amount of time and resources needed to identify and prioritize adoption of IT tools. Despite evidence of improved patient outcomes, panelists had substantial concerns about implementing patient-reported outcome tracking tools, voicing concerns about liability, lack of familiarity with new technology, and additional time and workflow changes such tools would require. Instead, clinicians favored technologies that did not require clinician involvement.ConclusionsHealth system leaders can use the rapid evidence review process presented here to usefully inform local technology adoption, implementation, and use in practice.

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“…Closed Facebook groups, like the one mentioned by a participant in this study, can be used to facilitate communication with family members, including those who are out of touch or estranged, potentially improving proband reach and information dissemination. This method of communication, however, is not without privacy concerns (Househ et al, 2018), making this an area of hereditary cancer health communication that requires more research.…”

Section: Discussionmentioning

confidence: 99%

Abstract DPOC-005: #OVARIANCANCER: USING SOCIAL MEDIA TO FACILITATE HEALTH COMMUNICATION

Coffin

2017

Clinical Cancer Research

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Bioethics & Humanities Ovarian cancer is the fifth leading cause of cancer death among women. Women with a personal 2014). Anyone with an internet connection is invited to create, exchange, and consume usergenerated content, transforming passive consumers into content producers with increasing frequency (Keim & Noji 2011; Arigo et al., 2018). Today, over 72% of adult internet users go online for health information (Volkman et al., 2014; Fox & Duggan, 2013). This trend of seeking and consuming health information over social media is slated to increase along with growing mobile device ownership (PEW Research, 2018C). Social media users feel that the internet is a valuable source for health information, and often query their health concerns over social networking sites inhabited by people with shared health experiences (Duggan et al., 2015; Hong et al., 2012). Many of these individuals use the internet to address their health concerns and even self-diagnose before contacting their health care provider (

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Balancing Between Privacy and Patient Needs for Health Information in the Age of Participatory Health and Social Media: A Scoping Review

Cited by 43 publications

References 69 publications

Donor information in research and drug evaluation with induced pluripotent stem cells (iPSCs)

Donor information in research and drug evaluation with induced pluripotent stem cells (iPSCs)

A Rapid Process for Identifying and Prioritizing Technology-Based Tools for Health System Implementation

Abstract DPOC-005: #OVARIANCANCER: USING SOCIAL MEDIA TO FACILITATE HEALTH COMMUNICATION

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