Establishing an Enterprise-Level Integrated Data Governance System

The European Union (EU) has been advocating a strategy to assert its digital sovereignty for a relatively long period of time. This attempt, however, runs up against a range of obvious problems and obstacles, such as a united Europe’s dependence on foreign technologies and services and the inadequacy of investments made to support its industrial policy (in particular in the digital sphere). The EU is trying to overcome these problems with an ambitious strategy, the “European strategy for data”, which will enable the Union to navigate in an international context characterized by a substantial lack of a global data governance system, but the efficiency and effectiveness of the strategy can only be assessed in a few years' time. According to the author of this paper’s point of view, to achieve its policy objectives, the EU must pay attention to safeguarding the competitiveness of its companies, pursuing policies that, in defending the right to privacy and security of European users, are clear and harmonized. At the same time, the EU must implement policies that are able to redistribute the wealth produced in the digital field, countering the current dangerous concentrations of wealth and power in the hands of a few oligopolistic companies.

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Introducing a communication platform for accountable and transparent data processing in medical research (Preprint)

10.2196/preprints.30024 ◽

2021 ◽

Author(s):

Yuki Kuroda ◽

Goshiro Yamamoto ◽

Kazuya Okamoto ◽

Tomohiro Kuroda

Keyword(s):

Data Processing ◽

Medical Research ◽

Medical Data ◽

Data Governance ◽

Governance System ◽

Communication Platform ◽

Rule Compliance ◽

Medical Data Processing ◽

Medical Researchers ◽

System Requirements

BACKGROUND Medical research for processing medical data is required to incorporate a governance system. Health data governance includes various elements. Among the values of governance, this study focuses on accountability and transparency. OBJECTIVE This paper proposes the system requirements for a communication platform to help medical researchers be accountable and transparent about medical data processing in medical research. METHODS We first examined accountability and transparency to find their shared bases and confirmed their importance by visiting medical research practices. Subsequently, we explored legal syllogism as the representative of rule compliance analysis to determine the system requirements to achieve the bases. RESULTS By examining accountability and transparency, we confirmed that these values were inherently vague but had two shared features– "organizing information" and "effective communication." Next, by analyzing the actual research process, we found that researchers needed to communicate effectively with legal and ethical experts to obtain appropriate support at the research planning phase. From these findings, the concept of a communication platform was derived. Through the analysis of the syllogism, we found three system requirements for the platform: (1) covering the entire chain of data processing activities; (2) being capable of recording relevant information for rule compliance analysis; and (3) being able to record compliance analysis results. CONCLUSIONS We introduced an example of a user interface in line with the discovered system requirements and discussed how our design can facilitate patients' and society's interests by empowering researchers to be accountable and transparent for their research. To support medical researchers to be accountable and transparent for their research, we proposed system requirements for a communication platform. CLINICALTRIAL N/A

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Using cloud-based, open-source technology to evaluate, improve, and rapidly disseminate community-based intervention data

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocaa181 ◽

2020 ◽

Vol 27 (11) ◽

pp. 1741-1746

Author(s):

Carlene A Mayfield ◽

Margaret E Gigler ◽

Leslie Snapper ◽

Jainmary Jose ◽

Jackie Tynan ◽

...

Keyword(s):

Data Collection ◽

Open Source ◽

Formative Evaluation ◽

Time Lapse ◽

Data Governance ◽

Governance System ◽

Electronic Data Collection ◽

Community Initiative ◽

Collaborative Engagement ◽

Stage 1

Abstract Building Uplifted Families (BUF) is a cross-sector community initiative to improve health and economic disparities in Charlotte, North Carolina. A formative evaluation strategy was used to support iterative process improvement and collaborative engagement of cross-sector partners. To address challenges with electronic data collection through REDCap Cloud, we developed the BUF Rapid Dissemination (BUF-RD) model, a multistage data governance system supplemented by open-source technologies, such as: Stage 1) data collection; Stage 2) data integration and analysis; and Stage 3) dissemination. In Stage 3, results were disseminated through an interactive dashboard developed in RStudio using RShiny and Shiny Server solutions. The BUF-RD model was successfully deployed in a 6-month beta test to reduce the time lapse between data collection and dissemination from 3 months to 2 weeks. Having up-to-date preliminary results led to improved BUF implementation, enhanced stakeholder engagement, and greater responsiveness and alignment of program resources to specific participant needs.

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