Findings from 2017 on Consumer Health Informatics and Education: Health Data Access and Sharing

Staccini, Pascal; Lau, Annie

doi:10.1055/s-0038-1641218

Cited by 11 publications

(9 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The analysis provided the principle of fairness in two dimensions which include fair access and procedural fairness [A 14 , 39 , 41 , 42 , 48 , 51 , 52 , 76 , 84 , 93 – 95 ]. Fairness in terms of fair access has to do with the requirements for users being allowed to look at and use the data [A 14 ], and should address concerns about fair or equitable access to data, research results, and public health benefits derived from those results [A 51 ].…”

Section: Resultsmentioning

confidence: 99%

“…This sometimes means that Individuals should be provided with a simple and timely means to access and obtain their individually identifiable health information in a reliable form and format [A 42 ]. Governance frameworks may allow for information to be exchanged in certain scenarios including data subjects or research participants being able to access their own biomedical data e.g via patient portals to facilitate fair access [A 84 ]. However, how custodians or data stewards or even clinicians react to such access by patients and other data consumers need to be addressed in governance frameworks to promote fair access.…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

The ethical and legal landscape of brain data governance

2022

View full text Add to dashboard Cite

Neuroscience research is producing big brain data which informs both advancements in neuroscience research and drives the development of advanced datasets to provide advanced medical solutions. These brain data are produced under different jurisdictions in different formats and are governed under different regulations. The governance of data has become essential and critical resulting in the development of various governance structures to ensure that the quality, availability, findability, accessibility, usability, and utility of data is maintained. Furthermore, data governance is influenced by various ethical and legal principles. However, it is still not clear what ethical and legal principles should be used as a standard or baseline when managing brain data due to varying practices and evolving concepts. Therefore, this study asks what ethical and legal principles shape the current brain data governance landscape? A systematic scoping review and thematic analysis of articles focused on biomedical, neuro and brain data governance was carried out to identify the ethical and legal principles which shape the current brain data governance landscape. The results revealed that there is currently a large variation of how the principles are presented and discussions around the terms are very multidimensional. Some of the principles are still at their infancy and are barely visible. A range of principles emerged during the thematic analysis providing a potential list of principles which can provide a more comprehensive framework for brain data governance and a conceptual expansion of neuroethics.

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

The ethical and legal landscape of brain data governance

2022

View full text Add to dashboard Cite

show abstract

“…The finding that more patients were comfortable with social screening itself than with its documentation in the EHR is consistent with a recent study on social risk screening where participants reported concern with privacy and utilization of social risk data 33 and findings from other work describing patients' unease around sharing health data. 56,57 There are already calls for developing standards to protect social risk data in EHRs, 58 which is increasingly relevant in the context of new efforts to share data across sectors. 59,60 Qualitative findings presented in the companion paper in this supplement augment understanding of participant EHR-related concerns.…”

Section: Discussionmentioning

confidence: 99%

Part I: A Quantitative Study of Social Risk Screening Acceptability in Patients and Caregivers

Marchis

Hessler

Fichtenberg

et al. 2019

American Journal of Preventive Medicine

137

170

View full text Add to dashboard Cite

Introduction: Despite recent growth in healthcare delivery-based social risk screening, little is known about patient perspectives on these activities. This study evaluates patient and caregiver acceptability of social risk screening. Methods: This was a cross-sectional survey of 969 adult patients and adult caregivers of pediatric patients recruited from 6 primary care clinics and 4 emergency departments across 9 states. Survey items included the Center for Medicare and Medicaid Innovation Accountable Health Communities' social risk screening tool and questions about appropriateness of screening and comfort with including social risk data in electronic health records. Logistic regressions evaluated covariate associations with acceptability measures. Data collection occurred from July 2018 to February 2019; data analyses were conducted in February-March 2019. Results: Screening was reported as appropriate by 79% of participants; 65% reported comfort including social risks in electronic health records. In adjusted models, higher perceived screening appropriateness was associated with previous exposure to healthcare-based social risk screening (AOR=1.82, 95% CI=1.16, 2.88), trust in clinicians (AOR=1.55, 95% CI=1.00, 2.40), and recruitment from a primary care setting (AOR=1.70, 95% CI=1.23, 2.38). Lower appropriateness was

show abstract

“…Research has shown that the willingness to participate in biomedical research advertised on social media platforms and search engines, as well as the willingness to share digital data with researchers, have been affected by recent news on the misuse of such data [39]. However, research about willingness to share data in health social media is still in its infancy and hence, further research in this space within a participatory health paradigm is warranted [40].…”

Section: Data Privacy Security and Quality Assurance Are The Most Rmentioning

confidence: 99%

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

et al. 2020

View full text Add to dashboard Cite

Summary 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.

show abstract

Findings from 2017 on Consumer Health Informatics and Education: Health Data Access and Sharing

Cited by 11 publications

References 16 publications

The ethical and legal landscape of brain data governance

The ethical and legal landscape of brain data governance

Part I: A Quantitative Study of Social Risk Screening Acceptability in Patients and Caregivers

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

Contact Info

Product

Resources

About