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

2018 ◽  
Vol 27 (01) ◽  
pp. 029-036 ◽  
Author(s):  
Mowafa Househ ◽  
Rebecca Grainger ◽  
Carolyn Petersen ◽  
Panagiotis Bamidis ◽  
Mark Merolli
Keyword(s):  
Social Media ◽  
Health Information ◽  
Data Sharing ◽  
Scoping Review ◽  
Working Group ◽  
Patient Needs ◽  
Patient Privacy ◽  
Enabling Technologies ◽  
Clinical Records ◽  
Privacy And Confidentiality

Objectives: With the increased use of participatory health enabling technologies, such as social media, balancing the need for health information with patient privacy and confidentiality has become a more complex and immediate concern. The purpose of this paper produced by the members of the IMIA Participatory Health and Social Media (PHSM) working group is to investigate patient needs for health information using participatory health enabling technologies, while balancing their needs for privacy and confidentiality. Methods: Six domain areas including media sharing platforms, patient portals, web-based platforms, crowdsourcing websites, medical avatars, and other mobile health technologies were identified by five members of the IMIA PHSM working group as relevant to participatory health and the balance between data sharing and patient needs for privacy and confidentiality. After identifying the relevant domain areas, our scoping review began by searching several databases such as PubMed, MEDLINE, Scopus, and Google Scholar using a variety of key search terms. Results: A total of 1,973 studies were identified, of which 68 studies met our inclusion criteria and were included in the analysis. Results showed that challenges for balancing patient needs for information and privacy and confidentiality concerns included: cross-cultural understanding, clinician and patient awareness, de-identification of data, and commercialization of patient data. Some opportunities identified were patient empowerment, connecting participatory health enabling technologies with clinical records, open data sharing agreement, and e-consent. Conclusion: Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between balancing individual needs and the desire to uphold privacy and confidentiality. We recommend that guidelines for both patients and clinicians, in terms of their use of participatory health-enabling technologies, are developed to ensure that patient privacy and confidentiality are protected, and a maximum benefit can be realized.

scholarly journals Social Media: Opportunity or threat to public health in context of Nepal

2017 ◽  
Vol 16 (1) ◽  
pp. 7-9 ◽  
Author(s):  
Dip Narayan Thakur
Keyword(s):  
Social Media ◽  
Health Information ◽  
Physical Inactivity ◽  
Relative Effectiveness ◽  
Boost Factor ◽  
Research Findings ◽  
Privacy And Confidentiality ◽  
Health Commodities ◽  
Use Of Internet ◽  
Health Information Sharing

Social media, one of the greatest tools for sharing information, are used for various purposes in health like educational and promotional activities, communication - of research findings and during crisis readiness. In addition, online conference and webinar for health purpose, e-procurement of health commodities and telemedicine are some domains where we use social media. In contrast to these, it brings out various ill impacts on health directly or indirectly, such as cyberbullying, depression, anxiety, sleep disorders, physical inactivity- a boost factor for non-communicable diseases and internet addiction. As this field is new in health and being used innovatively, issues of their effectiveness, privacy and confidentiality begin to rise. Moreover, authenticity of the health information available on social media is another issue, all of which need guidance by evidence based acts and regulations. Else, it may harm the belief of users on the platform, which is the future for health information sharing. With very few researches done regarding the use of internet and social media, and increasing addiction towards them possesses an extra threat to health in Nepal. Hence, research regarding possible hazards of social media use and relative effectiveness of social media over other communication channel is needed, to develop necessary strategies to overcome possible threats to health and utilize social media for health to its optimum potential.

scholarly journals The OpenDeID corpus for patient de-identification

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Jitendra Jonnagaddala ◽  
Aipeng Chen ◽  
Sean Batongbacal ◽  
Chandini Nekkantti
Keyword(s):  
Electronic Health Records ◽  
Health Information ◽  
Sensitive Information ◽  
Protected Health Information ◽  
Patient Privacy ◽  
Health Records ◽  
Automatic Methods ◽  
Electronic Health ◽  
Pathology Reports ◽  
Privacy And Confidentiality

AbstractFor research purposes, protected health information is often redacted from unstructured electronic health records to preserve patient privacy and confidentiality. The OpenDeID corpus is designed to assist development of automatic methods to redact sensitive information from unstructured electronic health records. We retrieved 4548 unstructured surgical pathology reports from four urban Australian hospitals. The corpus was developed by two annotators under three different experimental settings. The quality of the annotations was evaluated for each setting. Specifically, we employed serial annotations, parallel annotations, and pre-annotations. Our results suggest that the pre-annotations approach is not reliable in terms of quality when compared to the serial annotations but can drastically reduce annotation time. The OpenDeID corpus comprises 2,100 pathology reports from 1,833 cancer patients with an average of 737.49 tokens and 7.35 protected health information entities annotated per report. The overall inter annotator agreement and deviation scores are 0.9464 and 0.9726, respectively. Realistic surrogates are also generated to make the corpus suitable for distribution to other researchers.

scholarly journals Determining Health Information Technology Use by the Transgender Population: A Scoping Review

2019 ◽  
Vol 2 (1) ◽  
Author(s):  
Albert Liu ◽  
Joy Lee ◽  
Michael Weiner
Keyword(s):  
Information Technology ◽  
Social Media ◽  
Health Information Technology ◽  
Health Information ◽  
Scoping Review ◽  
Technology Use ◽  
Future Research ◽  
Inclusion Criteria ◽  
Transgender People ◽  
Online Social Media

Background: Transgender people face many potential barriers in healthcare, such as real or perceived discrimination, inability to pay for healthcare services, and misinformation about transgender health needs. It has been hypothesized that, because of these barriers, transgender people may be more receptive to using health information technology than other populations. The purpose of this scoping review was to understand the ways transgender people use health information technology. Methods: This scoping review included English studies that addressed use of technology by transgender people in health sciences literature. The inclusion criteria was studies that documented transgender technology use and did not include studies that only focused on technology use by healthcare providers. Included studies were sorted into categories based on the type of technology transgender participants used. Results: Twenty-nine articles met the study inclusion criteria from an initial pool of 1,276 articles searched from online databases. Many studies were involved with multiple categories. Fourteen articles addressed websites targeting transgender people, twelve included the usage of online social media sites, seven articles involved transgender usage of online surveys, and four articles discussed transgender usage of smartphones in health management. Conclusion and potential impact: Twenty-two studies focused on the application of interventions through websites and social media sites, nineteen of which concluded that web-based health information or interventions were feasible methods to affect the health of transgender people. Sixteen studies concluded that online interactions were accepted, if not preferred, by their transgender participants. This review suggests that further integration of online interventions and healthcare information into these mediums may increase transgender engagement in healthcare and reduce healthcare barriers. Future research to improve understanding of the outcomes of health information technology on the health of transgender people would be an asset for treating a historically medically underserved community.

Considering the Impact of Social Media on Contemporary Improvement of Australian Aboriginal Health: Scoping Review (Preprint)

2018 ◽  
Author(s):  
Troy Walker ◽  
Claire Palermo ◽  
Karen Klassen
Keyword(s):  
Social Media ◽  
Scoping Review ◽  
Torres Strait Islander ◽  
Aboriginal People ◽  
Aboriginal Health ◽  
Health Messages ◽  
Community Control ◽  
Torres Strait Islander People ◽  
Australian Aboriginal ◽  
Torres Strait

BACKGROUND Social media may have a significant role in influencing the present and future health implications among Australian Aboriginal and Torres Strait Islander people, yet there has been no review of the role of social media in improving health. OBJECTIVE This study aims to examine the extent of health initiatives using social media that aimed to improve the health of Australian Aboriginal communities. METHODS A scoping review was conducted by systematically searching databases CINAHL Plus; PubMed; Scopus; Web of Science, and Ovid MEDLINE in June 2017 using the terms and their synonyms “Aboriginal” and “Social media.” In addition, reference lists of included studies and the Indigenous HealthInfonet gray literature were searched. Key information about the social media intervention and its impacts on health were extracted and data synthesized using narrative summaries. RESULTS Five papers met inclusion criteria. All included studies were published in the past 5 years and involved urban, rural, and remote Aboriginal or Torres Strait Islander people aged 12-60 years. No studies reported objective impacts on health. Three papers found that social media provided greater space for sharing health messages in a 2-way exchange. The negative portrayal of Aboriginal people and negative health impacts of social media were described in 2 papers. CONCLUSIONS Social media may be a useful strategy to provide health messages and sharing of content among Aboriginal people, but objective impacts on health remain unknown. More research is necessary on social media as a way to connect, communicate, and improve Aboriginal health with particular emphasis on community control, self-empowerment, and decolonization.

Social media and peer-to-peer support for individuals with health care needs and their caregivers: a scoping review (Preprint)

2019 ◽  
Author(s):  
Katherine Kelly ◽  
Shelley Doucet ◽  
Alison Luke ◽  
Rima Azar ◽  
William Montelpare
Keyword(s):  
Health Care ◽  
Social Media ◽  
Peer Support ◽  
Scoping Review ◽  
Emotional Support ◽  
Peer To Peer ◽  
Health Care Needs ◽  
Care Providers ◽  
Care Needs ◽  
The Many

BACKGROUND Individuals with health care needs and their caregivers require substantial informational and emotional support. Providing this support is a major challenge for care providers, who are often not able to adequately address barriers and may not be aware of available services and programs. Online P2P support offers an accessible and inexpensive source of support; however, the breadth of these supports on social media has not been previously documented. OBJECTIVE This study was a scoping review of research examining the use of peer-to-peer support on social media by individuals with health care needs and their caregivers. METHODS This review used the PRISMA-SR method to search for articles from 1997 to 2019. RESULTS A total of 94 articles were included. Patients and caregivers use many social media websites for P2P interaction, including: Facebook (n = 19), Twitter (n = 7), and YouTube (n = 6). Providing and receiving informational and emotional support were important uses of social media for P2P support; however, the specific needs and experiences of patients and caregivers appeared to change as knowledge regarding the condition(s) improved. Despite the many benefits associated with participating in online P2P groups, concerns related to ethics, privacy, and the potential to spread misinformation are outlined as risks associated with its use. CONCLUSIONS This study revealed that patients and caregivers engage in P2P support on social media to receive informational and emotional support from peers, despite known risks and limitations. Social networking websites were revealed to be particularly suited for P2P support communication.

The Relationship Between Highly Visual Social Media and Young People’s Mental Health: A Scoping Review (Preprint)

2020 ◽  
Author(s):  
Alanna McCrory
Keyword(s):  
Mental Health ◽  
Social Media ◽  
Young People ◽  
Scoping Review ◽  
Quantitative Methods ◽  
Grey Literature ◽  
Significant Proportion ◽  
Mental Wellbeing ◽  
Published Evidence ◽  
The Impact

UNSTRUCTURED Users of highly visual social media (HVSM), such as Snapchat and Instagram, share their messages through images, rather than relying on words. A significant proportion of people that use these platforms are adolescents. Previous research reveals mixed evidence regarding the impact of online social technologies on this age group’s mental wellbeing, but it is uncertain whether the psychological effects of visual content alone differ from text-driven social media. This scoping review maps existing literature that has published evidence about highly visual social media, specifically its psychological impact on young people. Nine electronic databases and grey literature from 2010 until March 2019 were reviewed for articles describing any aspect of visual social media, young people and their mental health. The screening process retrieved 239 articles. With the application of eligibility criteria, this figure was reduced to 25 articles for analysis. Results indicate a paucity of data that exclusively examines HVSM. The predominance of literature relies on quantitative methods to achieve its objectives. Many findings are inconsistent and lack the richness that qualitative data may provide to explore the reasons for theses mixed findings.

Social Media and the Transformation of Healthcare: A Viewpoint (Preprint)

2020 ◽  
Author(s):  
Ella Forgie ◽  
Hollis Lai ◽  
Bo Cao ◽  
Eleni Stroulia ◽  
Andrew James Greenshaw ◽  
...  
Keyword(s):  
Social Media ◽  
Health Information ◽  
Information Seeking ◽  
Virtual Communities ◽  
Community Support ◽  
Security And Privacy ◽  
Support Network ◽  
Full Potential ◽  
Physician Patient Relationship ◽  
Mediation Effects

UNSTRUCTURED As many as 80% of internet users seek health information online. The social determinants of health (SDoH) are intimately related to who has access to the internet and healthcare as a whole. Those who face more barriers to care are more likely to benefit from accessing health information online, granted the information they are retrieving is accurate. Virtual communities on social media platforms are particularly interesting as venues for seeking health information online because peers have been shown to influence health behaviour more than almost anything else. Thus, it is important to recognize the potential of social media to have positive mediation effects on health, so long as any negative mediation effects are reconcilable. As a positive mediator of health, social media can be used as a direct or indirect mode of communication between physicians and patients, a venue for health promotion and health information, and a community support network. False or misleading content, social contagion, confirmation bias, and security and privacy concerns must be mitigated in order to realize full potential of social media as a positive mediator of health. In any case, it is clear that the intersections between the SDoH, social media, and health are intimate, and they must be taken into consideration by physicians. Here, we argue that a paradigm shift in the physician-patient relationship is warranted, one where physicians: a) acknowledge the impacts of the SDoH on information-seeking behaviour, b) recognize the positive and negative roles of social media as a mediator of health through the lens of the SDoH, and c) use social media to catalyze positive changes in the standard of care.

scholarly journals Mental health professional perspectives on health data sharing: Mixed methods study

2020 ◽  
Vol 26 (3) ◽  
pp. 2067-2082 ◽  
Author(s):  
Adela Grando ◽  
Julia Ivanova ◽  
Megan Hiestand ◽  
Hiral Soni ◽  
Anita Murcko ◽  
...  
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Health Professionals ◽  
Mixed Methods Study ◽  
Qualitative And Quantitative Analysis ◽  
Qualitative And Quantitative ◽  
Patient Comprehension ◽  
Professional Perspectives ◽  
The Impact ◽  
Perceived Reasons

This study explores behavioral health professionals’ perceptions of granular data. Semi-structured in-person interviews of 20 health professionals were conducted at two different sites. Qualitative and quantitative analysis was performed. While most health professionals agreed that patients should control who accesses their personal medical record (70%), there are certain types of health information that should never be restricted (65%). Emergent themes, including perceived reasons that patients might share or withhold certain types of health information (65%), care coordination (12%), patient comprehension (11%), stigma (5%), trust (3%), sociocultural understanding (3%), and dissatisfaction with consent processes (1%), are explored. The impact of care role (prescriber or non-prescriber) on data-sharing perception is explored as well. This study informs the discussion on developing technology that helps balance provider and patient data-sharing and access needs.

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