Managing Your Health Online: Issues in the Selection, Curation, and Sharing of Digital Health Information

2018 ◽  
pp. 433-450
Author(s):  
Elizabeth Sillence ◽  
Pam Briggs
Keyword(s):  
Health Information ◽  
Personal Information ◽  
Digital Health ◽  
Personal Health Information ◽  
Future Research ◽  
Online Health Information ◽  
Personal Health ◽  
Self Disclosure ◽  
Complex Information ◽  
Personal Experiences

It is now easier than ever before to access digital health information. Individuals can monitor and record information about their own health, gather information online, and share personal experiences with those in a similar position. In fact, this shift towards peer-to-peer sharing sites represents a significant change in the way people think about online health information and raises a number of challenges around eHealth and personal information management, including issues of trust, privacy, and self-disclosure. This chapter examines two of those challenges in light of increased peer exchange around health: the sharing of personal health information, and the curation of such a large and complex information resource. It also discusses directions for future research in the field.

scholarly journals Locking it down

2016 ◽  
Vol 150 (1) ◽  
pp. 60-66 ◽  
Author(s):  
Kelly Grindrod ◽  
Jonathan Boersema ◽  
Khrystine Waked ◽  
Vivian Smith ◽  
Jilan Yang ◽  
...  
Keyword(s):  
Health Information ◽  
Personal Information ◽  
Medication Management ◽  
Kappa Statistic ◽  
Personal Health Information ◽  
Third Party ◽  
Personal Health ◽  
Privacy And Security ◽  
Standard Data ◽  
Android Apps

Objective: To explore the privacy and security of free medication applications (apps) available to Canadian consumers. Methods: The authors searched the Canadian iTunes store for iOS apps and the Canadian Google Play store for Android apps related to medication use and management. Using an Apple iPad Air 2 and a Google Nexus 7 tablet, 2 reviewers generated a list of apps that met the following inclusion criteria: free, available in English, intended for consumer use and related to medication management. Using a standard data collection form, 2 reviewers independently coded each app for the presence/absence of passwords, the storage of personal health information, a privacy statement, encryption, remote wipe and third-party sharing. A Cohen’s Kappa statistic was used to measure interrater agreement. Results: Of the 184 apps evaluated, 70.1% had no password protection or sign-in system. Personal information, including name, date of birth and gender, was requested by 41.8% (77/184) of apps. Contact information, such as address, phone number and email, was requested by 25% (46/184) of apps. Finally, personal health information, other than medication name, was requested by 89.1% (164/184) of apps. Only 34.2% (63/184) of apps had a privacy policy in place. Conclusion: Most free medication apps offer very limited authentication and privacy protocols. As a result, the onus currently falls on patients to input information in these apps selectively and to be aware of the potential privacy issues. Until more secure systems are built, health care practitioners cannot fully support patients wanting to use such apps.

scholarly journals Data protection, data management, and data sharing: Stakeholder perspectives on the protection of personal health information in South Africa

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260341
Author(s):  
Ciara Staunton ◽  
Kathrina Tschigg ◽  
Gayle Sherman
Keyword(s):  
South Africa ◽  
Health Information ◽  
Data Protection ◽  
Personal Information ◽  
Data Use ◽  
Personal Health Information ◽  
Personal Health ◽  
Structured Interviews ◽  
Laboratory Service ◽  
The Impact

The Protection of Personal Information Act (POPIA) 2013 came into force in South Africa on 1 July 2020. It seeks to strengthen the processing of personal information, including health information. While POPIA is to be welcomed, there are concerns about the impact it will have on the processing of health information. To ensure that the National Health Laboratory Service [NHLS] is compliant with these new strict processing requirements and that compliance does not negatively impact upon its current screening, treatment, surveillance and research mandate, it was decided to consider the development of a NHLS POPIA Code of Conduct for Personal Health. As part of the process of developing such a Code and better understand the challenges faced in the processing of personal health information in South Africa, 19 semi-structured interviews with stakeholders were conducted between June and September 2020. Overall, respondents welcomed the introduction of POPIA. However, they felt that there are tensions between the strengthening of data protection and the use of personal information for individual patient care, treatment programmes, and research. Respondents reported a need to rethink the management of personal health information in South Africa and identified 5 issues needing to be addressed at a national and an institutional level: an understanding of the importance of personal information; an understanding of POPIA and data protection; improve data quality; improve transparency in data use; and improve accountability in data use. The application of POPIA to the processing of personal health information is challenging, complex, and likely costly. However, personal health information must be appropriately managed to ensure the privacy of the data subject is protected, but equally that it is used as a resource in the individual’s and wider public interest.

scholarly journals Sharing and helping: predictors of adolescents’ willingness to share diabetes personal health information with peers

2017 ◽  
Vol 25 (2) ◽  
pp. 135-141 ◽  
Author(s):  
Sarah E Vaala ◽  
Joyce M Lee ◽  
Korey K Hood ◽  
Shelagh A Mulvaney
Keyword(s):  
Social Learning ◽  
Health Information ◽  
Glucose Control ◽  
Online Survey ◽  
Personal Information ◽  
Social Resources ◽  
Personal Health Information ◽  
Personal Health ◽  
Helping Others

Abstract Objective Sharing personal information about type 1 diabetes (T1D) can help adolescents obtain social support, enhance social learning, and improve self-care. Diabetes technologies, online communities, and health interventions increasingly feature data-sharing components. This study examines factors underlying adolescents’ willingness to share personal T1D information with peers. Materials and Methods Participants were 134 adolescents (12–17 years of age; 56% female) who completed an online survey regarding experiences helping others with T1D, perceived social resources, beliefs about the value of sharing information and helping others, and willingness to share T1D information. Hemoglobin A1c values were obtained from medical records. Results Adolescents were more willing to share how they accomplished T1D tasks than how often they completed them, and least willing to share glucose control status. In multivariate analyses, sharing/helping beliefs (β = 0.26, P < .01) and glucose control (HbA1c value; β = −0.26, P < .01) were related to greater willingness to share personal health information. Glucose control moderated relationships such that adolescents with worse A1c values had stronger relationships between sharing/helping beliefs and willingness to share (β = 0.18, P < .05) but weaker relationships between helping experience and willingness to share (β = −0.22, P = .07). Discussion Many adolescents with T1D are willing to share personal health information, particularly if they have better diabetes health status and a stronger belief in the benefits of sharing. Conclusion Social learning and social media components may improve intervention participation, engagement, and outcomes by boosting adolescents’ beliefs about the benefits of sharing information and helping others.

scholarly journals Willingness to share personal health information: impact of attitudes, trust and control

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jari Juga ◽  
Jouni Juntunen ◽  
Timo Koivumäki
Keyword(s):  
Health Care ◽  
Information Sharing ◽  
Health Information ◽  
Structural Equation ◽  
Personal Information ◽  
Personal Health Information ◽  
Equation Modeling ◽  
Personal Health ◽  
Content Type ◽  
And Control

Purpose This study aims to explicate the behavioral factors that determine willingness to share personal health data for secondary uses. Design/methodology/approach A theoretical model is developed and tested with structural equation modeling using survey data from Finland. Findings It is shown that attitude toward information sharing is the strongest factor contributing to the willingness to share personal health information (PHI). Trust and control serve as mediating factors between the attitude and willingness to share PHI. Research limitations/implications The measures of the model need further refinement to cover the various aspects of the behavioral concepts. Practical implications The model provides useful insights into the factors that affect the willingness for information sharing in health care and in other areas where personal information is distributed. Social implications Sharing of PHI for secondary purposes can offer social benefits through improvements in health-care performance. Originality/value A broad-scale empirical data gives a unique view of attitudes toward sharing of PHI in one national setting.

How Research Will Adapt to HIPAA: A View from Within the Healthcare Delivery System

2002 ◽  
Vol 28 (4) ◽  
pp. 491-502
Author(s):  
Mary L. Durham
Keyword(s):  
Health Information ◽  
Healthcare Delivery ◽  
Healthcare Providers ◽  
The United States ◽  
Personal Health Information ◽  
Personal Health ◽  
Business Associations ◽  
Electronic Information ◽  
Healthcare Delivery System ◽  
Institutional Review

While the new Health Insurance Privacy and Accountability Act (HIPAA) research rules governing privacy, confidentiality and personal health information will challenge the research and medical communities, history teaches us that the difficulty of this challenge pales in comparison to the potential harms that such regulations are designed to avoid. Although revised following broad commentary from researchers and healthcare providers around the country, the HIPAA privacy requirements will dramatically change the way healthcare researchers do their jobs in the United States. Given our reluctance to change, we risk overlooking potentially valid reasons why access to personal health information is restricted and regulated. In an environment of electronic information, public concern, genetic information and decline of public trust, regulations are ever-changing. Six categories of HIPAA requirements stand out as transformative: disclosure accounting/tracking, business associations, institutional review board (IRB) changes, minimum necessary requirements, data de-identification, and criminal and civil penalties.

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