Organizational Perspectives on Technical Capabilities and Barriers Related to Pediatric Data Sharing and Confidentiality.
Ontology highlight
ABSTRACT:
SUBMITTER: Bedgood M
PROVIDER: S-EPMC9250046 | biostudies-literature | 2022 Jul
REPOSITORIES: biostudies-literature
Publications
Organizational Perspectives on Technical Capabilities and Barriers Related to Pediatric Data Sharing and Confidentiality.
Bedgood Michael M Kuelbs Cynthia L CL Jones Veena G VG Pageler Natalie N
JAMA network open 20220701 7
Similar Datasets
Project description:Purpose:The main focus of this study is to assess the knowledge and practices of healthcare practitioners regarding data sharing, security, and confidentiality, with a focus on the use of health data retrieved from electronic health records (EHRs) for research purposes. Methods:A descriptive, cross-sectional, questionnaire-based survey study was conducted across all academic institutions including all researchers in the medical field in Jordan. Personal and administrative practices in data sharing were assessed through collecting data from respondents. Results:The response rate was 22% with an average of 10.25 years of experience in publications. Almost 60% had published at least 1 to 3 studies using EHRs. The prevalence of researchers who "Always" used antivirus software and preserved patient's information was 75.5% and 92.2%, respectively. However, other personal security and confidentiality measures were not satisfactory. Less than half of health data used in the research was "Always" anonymised or encrypted and only around 44.0% had "Always" used sensitive data with more specificity than normal data. Conclusion:Confidentiality and data sharing practices of healthcare practitioners and researchers were generally less than optimal. Efforts from healthcare providers, health institutions, and lawmakers should be put in place to protect the security and confidentiality of electronic patient data.
| S-EPMC6890205 | biostudies-literature
Project description:BackgroundThe impetus for policies promoting medical data sharing in China has gained significant traction. Nonetheless, the present legal and ethical framework governing the research use of medical data in China, is characterized by a more restrictive rather than permissive approach. The proportion of Chinese medical data being leveraged for scientific research still has room for improvement at present, indicating a significant untapped potential for advancing medical knowledge and improving healthcare outcomes. Building upon this research, we aim to delve deeper into the challenges researchers encounter in the sharing of medical data through focus group interviews.MethodsWe conducted two focus group interviews study with researchers representing diverse disciplines to explore their perspectives on 21 June 2021 and 28 July 2021. A total of seventeen researchers willingly participated in this study, representing various professional backgrounds. Similar codes were merged. Research team discussions were also utilized to select interviewees' statements that were regarded as typical or representative.ResultsThe respondents demonstrated a strong understanding that medical data should not be disseminated arbitrarily, recognizing the importance of sharing data in compliance with laws. Through the interview, we found that although respondents stressed the importance of careful consideration regarding if and when this information can be responsibly released, none of the respondents raised the issue of necessitating consent from data subjects for the research use of medical data. This observation sharply contrasts with the stringent separate consent provisions for secondary data use outlined in the PIPL.ConclusionsThe findings from the focus group studies shed light on researchers' barriers and ethical challenges towards medical data sharing for scientific research, highlighting their deep concern for data security and cautious approach to sharing. The key objectives aimed at facilitating and enabling the reuse of medical data encompass enhancing interoperability, harmonizing data standards, improving data quality, safeguarding privacy, ensuring informed consent, incentivizing patients, and establishing explicit regulations pertaining to data access and utilization.
| S-EPMC11566659 | biostudies-literature
Project description:The data presented in this article provide one of the first large-scale insights on adult preferences for confidentiality and consent with regards to medical decision-making for minors. We collected data on these preferences through 12 hypothetical scenario's that were presented, for which each participant had to indicate if they would (not) follow the minor's preferences. Data regarding family communication, relationship quality, and sociodemographic characteristics were also collected. The data were collected through an online survey in September and October 2020, which yielded responses from 1000 Belgian and 1000 Dutch participants between 35 and 55 years of age. We selected this age range because it increased the chances that they had a child near the age of the fictional minor in the hypothetical cases. These data can be of interest for family researchers and/or health workers who want to explore adults' perceptions regarding confidentiality and consent among minors.
| S-EPMC9149021 | biostudies-literature
Project description:Background and objectivesFederal guidelines mandate that hospitals provide patients and caregivers with free, online access to their physician's clinical notes. This study sought to identify parent perceptions of the benefits and challenges of real-time note access during their child's hospitalization and strategies to optimize note-sharing at the bedside.MethodsThis qualitative study was conducted with parents of children aged <12 years admitted to a pediatric hospitalist service in April 2019. Parents were given access to their child's admission and daily progress notes on a bedside tablet (iPad), and interviewed upon discharge. In-depth, 60-minute interviews were audio-recorded and transcribed. Two researchers developed and refined a codebook and coded data inductively and deductively with validation by a third researcher. Thematic analysis was used to identify emergent themes.ResultsThe 28 interviewed parents described 6 benefits of having note access, which: provided a recap and improved their knowledge about their child's care plan, enhanced communication, facilitated empowerment, increased autonomy, and incited positive emotions. Potential challenges included that notes: caused confusion, hindered communication with the health care team, highlighted problems with note content, and could incite negative emotions. Parents recommended 4 strategies to support sharing: provide preemptive communication about expectations, optimize the note release process, consider parent-friendly note template modifications, and offer informational resources for parents.ConclusionsFindings provide a framework for operationalizing note-sharing with parents during hospitalization. These results have important implications for hospitals working to comply with federal regulations and researchers assessing the effects of increased information transparency in the inpatient setting.
| S-EPMC9998186 | biostudies-literature
Project description:ImportanceLimited sharing of data sets that accurately represent disease and patient diversity limits the generalizability of artificial intelligence (AI) algorithms in health care.ObjectiveTo explore the factors associated with organizational motivation to share health data for AI development.Design, setting, and participantsThis qualitative study investigated organizational readiness for sharing health data across the academic, governmental, nonprofit, and private sectors. Using a multiple case studies approach, 27 semistructured interviews were conducted with leaders in data-sharing roles from August 29, 2022, to January 9, 2023. The interviews were conducted in the English language using a video conferencing platform. Using a purposive and nonprobabilistic sampling strategy, 78 individuals across 52 unique organizations were identified. Of these, 35 participants were enrolled. Participant recruitment concluded after 27 interviews, as theoretical saturation was reached and no additional themes emerged.Main outcome and measureConcepts defining organizational readiness for data sharing and the association between data-sharing factors and organizational behavior were mapped through iterative qualitative analysis to establish a framework defining organizational readiness for sharing clinical data for AI development.ResultsInterviews included 27 leaders from 18 organizations (academia: 10, government: 7, nonprofit: 8, and private: 2). Organizational readiness for data sharing centered around 2 main constructs: motivation and capabilities. Motivation related to the alignment of an organization's values with data-sharing priorities and was associated with its engagement in data-sharing efforts. However, organizational motivation could be modulated by extrinsic incentives for financial or reputational gains. Organizational capabilities comprised infrastructure, people, expertise, and access to data. Cross-sector collaboration was a key strategy to mitigate barriers to access health data.Conclusions and relevanceThis qualitative study identified sector-specific factors that may affect the data-sharing behaviors of health organizations. External incentives may bolster cross-sector collaborations by helping overcome barriers to accessing health data for AI development. The findings suggest that tailored incentives may boost organizational motivation and facilitate sustainable flow of health data for AI development.
| S-EPMC10731479 | biostudies-literature
Project description:BackgroundThe 21st Century Cures Act mandates sharing electronic health records (EHRs) with patients. Health care providers must ensure confidential sharing of medical information with adolescents while maintaining parental insight into adolescent health. Given variability in state laws, provider opinions, EHR systems, and technological limitations, consensus on best practices to achieve adolescent clinical note sharing at scale is needed.ObjectivesThis study aimed to identify an effective intervention process to implement adolescent clinical note sharing, including ensuring adolescent portal account registration accuracy, across a large multihospital health care system comprising inpatient, emergency, and ambulatory settings.MethodsA query was built to assess portal account registration accuracy. At a large multihospital health care system, 80.0% of 12- to 17-year-old patient portal accounts were classified as inaccurately registered (IR) under a parent or registration accuracy unknown (RAU). To increase accurately registered (AR) accounts, the following interventions were pursued: (1) distribution of standardized portal enrollment training; (2) patient outreach email campaign to reregister 29,599 portal accounts; (3) restriction of access to remaining IR and RAU accounts. Proxy portal configurations were also optimized. Subsequently, adolescent clinical note sharing was implemented.ResultsDistribution of standardized training materials decreased IR and increased AR accounts (p = 0.0492 and 0.0058, respectively). Our email campaign (response rate: 26.8%) was most effective in decreasing IR and RAU accounts and increasing AR accounts (p < 0.002 for all categories). Remaining IR and RAU accounts, 54.6% of adolescent portal accounts, were subsequently restricted. Postrestriction, IR accounts continued declining significantly (p = 0.0056). Proxy portal enhancements with interventions deployed increased proxy portal account adoption.ConclusionA multistep intervention process can be utilized to effectively implement adolescent clinical note sharing at a large scale across care settings. Improvements to EHR technology, portal enrollment training, adolescent/proxy portal settings, detection, and automation in reenrollment of inaccurate portal accounts are needed to maintain integrity of adolescent portal access.
| S-EPMC10371408 | biostudies-literature
Project description:ObjectiveHorizontal consolidation in the hospital industry has gained momentum in the United States despite concerns over rising costs and lower quality. Hospital systems frequently point to potential gains in interoperability and electronic exchange of patient information as consolidation benefits. We sought to assess whether hospitals in different health system structures varied in their interoperable data sharing.Materials and methodsWe created a cross-sectional national hospital sample from the 2014 AHA Annual Survey and 2015 IT Supplement. We combined the existing taxonomy of health system organizational forms and the ONC's functionality-based, technology-agnostic definition of interoperability. We used logistic regression models to assess the relationship between health systems' organizational forms and interoperability engagement, controlling for hospital characteristics.ResultsWe found that interoperability engagement varied greatly across hospitals in different health system structures, with facilities in more centralized health systems more likely to be interoperable. Hospitals in one system type, featuring centralized insurance product development but diverse service offerings across member organizations, had significantly higher odds of being engaged in interoperable data sharing in our multivariate regression results.DiscussionThe heterogeneity in health system interoperability engagement indicates that incentives to share data vary greatly across organizational strategies and structures. Our results suggest that horizontal consolidation in the hospital industry may not bring significant gains in interoperability progress unless that consolidation takes a specific business alignment form.ConclusionPolicymakers should be wary of claims that horizontal consolidation will lead to interoperability gains. Future research should explore the specific mechanisms that lead to greater interoperability in certain health system organizational structures.
| S-EPMC7646916 | biostudies-literature
Project description:BackgroundCommunication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication.MethodsThe authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology.ResultsThe authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers.ConclusionsNurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual- to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology.Lay summaryClinicians and families experience many barriers to communication in pediatric oncology. The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed. In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy. With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology.
| S-EPMC8154640 | biostudies-literature
Project description:BackgroundWe aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research.MethodsWe conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis.ResultsFour key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust (and distrust) in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore.ConclusionMaintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.
| S-EPMC7678103 | biostudies-literature
Project description:Introduction: Health research is gradually embracing a more collectivist approach, fueled by a new movement of open science, data sharing and collaborative partnerships. However, the existence of systemic contradictions hinders the sharing of health data and such collectivist endeavor. Therefore, this qualitative study explores these systemic barriers to a fair sharing of health data from the perspectives of Swiss stakeholders. Methods: Purposive and snowball sampling were used to recruit 48 experts active in the Swiss healthcare domain, from the research/policy-making field and those having a high position in a health data enterprise (e.g., health register, hospital IT data infrastructure or a national health data initiative). Semi-structured interviews were then conducted, audio-recorded, verbatim transcribed with identifying information removed to guarantee the anonymity of participants. A theoretical thematic analysis was then carried out to identify themes and subthemes related to the topic of systemic fairness for sharing health data. Results: Two themes related to the topic of systemic fairness for sharing health data were identified, namely (i) the hypercompetitive environment and (ii) the legal uncertainty blocking data sharing. The theme, hypercompetitive environment was further divided into two subthemes, (i) systemic contradictions to fair data sharing and the (ii) need of fair systemic attribution mechanisms. Discussion: From the perspectives of Swiss stakeholders, hypercompetition in the Swiss academic system is hindering the sharing of health data for secondary research purposes, with the downside effect of influencing researchers to embrace individualism for career opportunities, thereby opposing the data sharing movement. In addition, there was a perceived sense of legal uncertainty from legislations governing the sharing of health data, which adds unreasonable burdens on individual researchers, who are often unequipped to deal with such facets of their data sharing activities.
| S-EPMC8131670 | biostudies-literature