The Case for Community Self-Governance on Access and Benefit Sharing of Digital Sequence Information.
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SUBMITTER: Adler Miserendino RA
PROVIDER: S-EPMC9113315 | biostudies-literature | 2022 May
REPOSITORIES: biostudies-literature
Publications
The Case for Community Self-Governance on Access and Benefit Sharing of Digital Sequence Information.
Adler Miserendino Rebecca A RA Meyer Rachel Sarah RS Zimkus Breda M BM Bates John J Silvestri Luciana L Taylor Crispin C Blumenfield Tami T Srigyan Megha M Pandey Jyotsna L JL
Bioscience 20220316 5
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Project description: Not available
| S-EPMC11464523 | biostudies-literature
Project description:ObjectivesAccess to personal health records in an ICU by persons involved in the patient's care (referred to broadly as "family members" below) has the potential to increase engagement and reduce the negative psychologic sequelae of such hospitalizations. Currently, little is known about patient preferences for information sharing with a designated family member in the ICU. We sought to understand the information-sharing preferences of former ICU patients and their family members and to identify predictors of information-sharing preferences.DesignWe performed an internet survey that was developed by a broad, multidisciplinary team of stakeholders. Formal pilot testing of the survey was conducted prior to internet survey administration to study subjects.SettingInternet survey.SubjectsSubjects included English-speaking adults who had an ICU experience or a family member with ICU experience between 2013 and 2016. We used panel sampling to ensure an ethnically representative sample of the U.S. population.InterventionsNone.Measurements and main resultsOne thousand five hundred twenty surveys were submitted, and 1,470 were included in analysis. The majority of respondents (93.6%) stated that they would want to share present and past medical history, either all or that related to their ICU stay, with a designated family member of their choosing. The majority (79%) would also want their designated family member to be able to access that information from a home computer. Although most respondents preferred to share all types of information, they indicated varying levels of willingness to share specific types of more sensitive information. Information-sharing preferences did not differ by age, sex, ethnicity, or type of prior experience in the ICU (i.e., patient or family member).ConclusionsIn the context of an ICU admission, sharing personal health information with a person of the patient's choosing appears desirable for most patients and family members. Policies and implementation of regulations should take this into consideration.
| S-EPMC8797001 | biostudies-literature
Project description:This paper contributes to the lack of longitudinal studies concerning online information access to corporate governance (CG) practices in the banking sector of Latin American countries. In particular, this study aims to analyze the factors that influence information transparency, both mandatory and voluntary, related to CG practices of banks that operate in Paraguay via their websites from 2016 to 2019. Findings indicate the need to improve the level of information available on websites, with disclosure of voluntary information on CG practices being more prevalent than the disclosure of mandatory information. Likewise, banks that operate in Paraguay have made scant "progress" regarding online access to their governance information over the years analyzed. Moreover, the factors "Bank size" and "listed status" positively influence the information transparency regarding CG practices of Paraguayan banks. In contrast, "leverage," "liquidity," "size of the audit firm," and "credit risk rating" are factors that have a negative relation with the extent of CG disclosure.
| S-EPMC8730433 | biostudies-literature
Project description:Objectives In this overview, we describe theObservational Medical Outcomes Partnership Common Data Model (OMOP-CDM), the established governance processes employed in EMR data repositories, and demonstrate how OMOP transformed data provides a lever for more efficient and secure access to electronic medical record (EMR) data by health service providers and researchers.Methods Through pseudonymisation and common data quality assessments, the OMOP-CDM provides a robust framework for converting complex EMR data into a standardised format. This allows for the creation of shared end-to-end analysis packages without the need for direct data exchange, thereby enhancing data security and privacy. By securely sharing de-identified and aggregated data and conducting analyses across multiple OMOP-converted databases, patient-level data is securely firewalled within its respective local site.Results By simplifying data management processes and governance, and through the promotion of interoperability, the OMOP-CDM supports a wide range of clinical, epidemiological, and translational research projects, as well as health service operational reporting.Discussion Adoption of the OMOP-CDM internationally and locally enables conversion of vast amounts of complex, and heterogeneous EMR data into a standardised structured data model, simplifies governance processes, and facilitates rapid repeatable cross-institution analysis through shared end-to-end analysis packages, without the sharing of data.Conclusion The adoption of the OMOP-CDM has the potential to transform health data analytics by providing a common platform for analysing EMR data across diverse healthcare settings.
| S-EPMC10882353 | biostudies-literature
Project description:AbstractIntroductionThe goal of access and benefit-sharing (ABS) in global health governance is to ensure that countries that provide access to genetic resources, including pathogens, receive equitable access to the benefits derived from their use. The increasing digitalisation of health data has brought this issue to the forefront of discussions on global health security and health equity. While originally conceptualised in supranational agreements, implementation of these treaties requires national-level legislation in each country. This descriptive analysis represents to our knowledge the first open-access comprehensive effort to map ABS policies in all 193 United Nations member states.MethodsWe conducted a standardised review of the legislation for 193 United Nations Member States across three global legal databases (ABS Clearing House, WIPOLEX and FAOLEX), national legal databases and a systematic Google search. Legally enforceable policies were identified, and data were extracted across the following eight aspects of ABS legislation: Scope of Legislation, Digital Sequence Information (DSI), Access to Resources, Prior Informed Consent, Contractual Terms, Benefit-Sharing, Compliance and Legal Sanctions.ResultsWe found that 104 countries have legally enforceable policies on ABS, with 92 countries having ABS policies relevant to microorganisms. Of these, 74 countries have chosen to restrict access to their domestic pathogens, and 53 have chosen to link access to pathogenic resources with an obligation to share benefits. Altogether 22 countries have a codified position on DSI with regard to ABS in legally enforceable policy: 16 have explicitly included it, 2 have explicitly excluded it and 4 have ambiguous wording. WHO regional coverage of ABS policy on genetic resources ranged from 28% (3/11) of countries in the Eastern Mediterranean Region to 57% (21/35) in the Region of the Americas. Likewise, regional coverage of legally enforceable ABS policy related to DSI ranged from 0% in the Eastern Mediterranean and European Regions to 36% (4/11) of countries in the Southeast Asian Region.ConclusionThese findings highlight the heterogeneity found in the global policy landscape as it pertains to ABS, and provide data to inform future agreements and research efforts related to ABS.
| S-EPMC11883887 | biostudies-literature
Project description:BackgroundDespite the 2015 Montgomery Ruling highlighting key requisites for informed consent, little has changed to modernise data-sharing and documentation of the consent process. It can be difficult to gauge patient understanding and address all patient concerns in time-limited appointments. We aimed to assess the feasibility of a digital information-sharing platform to support a move towards a digital informed consent process.MethodsAll adult patients referred to a single centre with symptomatic gallstones were invited to use a digital information-sharing platform to support the informed consent process prior to their first surgical clinic appointment. The platform provided patients with multimedia information on gallstones and available treatment options. It recorded the time spent accessing information, asked patients multiple choice questions (MCQs) to allow a self-test of understanding, documented a summary medical history, and allowed free text for patient questions. This information was summarised into a clinical report to support outpatient clinic consultations.ResultsOf the 349 patients registered to use the digital platform, 203 (58.2%) [165 (81.3%) female, mean age 47.6 years (range 19-84 years)] completed all modules necessary to generate a clinical report. Some 130 patients (64.0%) answered all 10 MCQs correctly and spent a mean of 18.7 min (range 3-88 min) reading the consent information. Most patient-reported medical histories were deemed to be accurate.ConclusionDespite difficulties with access, resulting in drop-outs, patients welcomed the opportunity to receive information digitally, prior to their consultation. Patients described feeling empowered and better informed to be involved in decision-making.
| S-EPMC9734622 | biostudies-literature
Project description:Biobanking infrastructures, which are crucial for responding early to new viral outbreaks, share pathogen genetic resources in an affordable, safe, and impartial manner and can provide expertise to address access and benefit-sharing issues. The European Virus Archive has had a crucial role in the global response to the COVID-19 pandemic by distributing EU-subsidised (free of charge) viral resources to users worldwide, providing non-monetary benefit sharing, implementing access and benefit-sharing compliance, and raising access and benefit-sharing awareness among members and users. All currently available SARS-CoV-2 material in the European Virus Archive catalogue, including variants of concern, are not access and benefit-sharing cases per se, but multilateral benefit-sharing has nevertheless occurred. We propose and discuss how a multilateral system enabling access and benefit-sharing from pathogen genetic resources, based on the European Virus Archive operational model, could help bridge the discrepancies between the current bilateral legal framework for pathogen genetic resources and actual pandemic response practices.
| S-EPMC8594928 | biostudies-literature
Project description:ImportanceDigital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy.ObjectiveTo determine whether different privacy protections are associated with consumers' willingness to share their digital health information for research, marketing, or clinical uses.Design, setting, and participantsThis 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022.Main outcomes and measuresParticipants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences.ResultsOf the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50 000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P < .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P < .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P < .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P < .001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%).Conclusions and relevanceIn this survey study of a nationally representative sample of US adults, consumers' willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information.
| S-EPMC9982693 | biostudies-literature
Project description:Online sharing impacts which information is widely available and influential in society. Yet, systematically influencing sharing behavior remains difficult. Past research highlights two factors associated with sharing: the social and self-relevance of the to-be-shared content. Based on this prior neuroimaging work and theory, we developed a manipulation in the form of short prompts that are attached to media content (here health news articles). These prompts encourage readers to think about how sharing the content may help them to fulfill motivations to present themselves positively (self-relevance) or connect positively to others (social relevance). Fifty-three young adults completed this pre-registered experiment while undergoing functional magnetic resonance imaging. Ninety-six health news articles were randomly assigned to three within-subject conditions that encouraged self-related or social thinking or a control. Invoking self-related or social thoughts about health-related news (vs control) (i) causally increased brain activity in a priori regions of interest chosen for their roles in processing social and self-relevance and (ii) causally impacted self-reported sharing intentions. This study provides evidence corroborating prior reverse inferences regarding the neural correlates of sharing. It further highlights the feasibility and utility of targeting neuropsychological processes to systematically facilitate online information spread.
| S-EPMC10088358 | biostudies-literature
Project description: Not available
| S-EPMC10278926 | biostudies-literature