Government-to-Business (G2B) research data sharing and the GDPR: Reconciling the public with the private?

Aidinlis, Stergios

doi:10.4337/9781800371682.00014

Cited by 3 publications

(1 citation statement)

References 8 publications

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“…Our research also provides empirical data that debunks the idea of the all-encompassing open, decentralized data ecosystem where all actors instantly freely exchange data with all types of ecosystem participants. Just as Aidinlis (2022) and Munné (2016), our research demonstrates that public sector organizations have specific requirements when participating in data ecosystems. Particularly, these requirements regard ensuring a high level of information security (e.g.…”

Section: Discussionmentioning

confidence: 68%

Citizen-Centric Personal Data Storage in The Public Sector: An Exploration of Opportunities, Challenges, and Preconditions

Vandercruysse,

D'Hauwers,

Bourgeus

2023

jim

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Public sector organizations are driven to re-imagine personal data management practices. Notably, the Flemish government aims to set up a Solid-enabled PDS-based data platform, which is to serve as the foundation of (personal) data sharing ecosystems that respect EU fundamental rights ‘by design.’ Of course, a critical success factor for this novel Flemish data platform is the broad adoption of citizen-centric data storage by public organizations in the region. This article constitutes an exploration of opportunities, challenges, and preconditions for the Flemish public sector through 13 expert interviews. Our findings show that citizen-centric personal data storage is expected to optimize intra-public sector data use, enable proactive public service provision, and foster trust. Challenges relate to a lack of human and financial resources, and data literacy/ inclusivity issues. For continued public sector engagement in PDS-based data ecosystems, preconditions in terms of moderation of ecosystem openness and data sharing reciprocity, as well as clustering of sub-ecosystems by use-cases, are to be considered.

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Section: Discussionmentioning

confidence: 68%

Citizen-Centric Personal Data Storage in The Public Sector: An Exploration of Opportunities, Challenges, and Preconditions

Vandercruysse,

D'Hauwers,

Bourgeus

2023

jim

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Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

Cumyn¹,

Ménard²,

Barton³

et al. 2023

J Med Internet Res

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Background Secondary use of health data has reached unequaled potential to improve health systems governance, knowledge, and clinical care. Transparency regarding this secondary use is frequently cited as necessary to address deficits in trust and conditional support and to increase patient awareness. Objective We aimed to review the current published literature to identify different stakeholders’ perspectives and recommendations on what information patients and members of the public want to learn about the secondary use of health data for research purposes and how and in which situations. Methods Using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, we conducted a scoping review using Medline, CINAHL, PsycINFO, Scopus, Cochrane Library, and PubMed databases to locate a broad range of studies published in English or French until November 2022. We included articles reporting a stakeholder’s perspective or recommendations of what information patients and members of the public want to learn about the secondary use of health data for research purposes and how or in which situations. Data were collected and analyzed with an iterative thematic approach using NVivo. Results Overall, 178 articles were included in this scoping review. The type of information can be divided into generic and specific content. Generic content includes information on governance and regulatory frameworks, technical aspects, and scientific aims. Specific content includes updates on the use of one’s data, return of results from individual tests, information on global results, information on data sharing, and how to access one’s data. Recommendations on how to communicate the information focused on frequency, use of various supports, formats, and wording. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content, and mixed approaches for specific content including websites, patient portals, and face-to-face encounters. Content should be tailored to the individual as much as possible with regard to length, avoidance of technical terms, cultural competence, and level of detail. Finally, the review outlined 4 major situations where communication was deemed necessary: before a new use of data, when new test results became available, when global research results were released, and in the advent of a breach in confidentiality. Conclusions This review highlights how different types of information and approaches to communication efforts may serve as the basis for achieving greater transparency. Governing bodies could use the results: to elaborate or evaluate strategies to educate on the potential benefits; to provide some knowledge and control over data use as a form of reciprocity; and as a condition to engage citizens and build and maintain trust. Future work is needed to assess which strategies achieve the greatest outreach while striking a balance between meeting information needs and use of resources.

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Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review (Preprint)

Cumyn¹,

Ménard²,

Barton³

et al. 2022

Preprint

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BACKGROUND Learning Health Systems rely on the secondary use of health data to improve care. Transparency regarding this secondary use is frequently cited as necessary to increase patient awareness, support alternative approaches to consent, and foster trust. OBJECTIVE To review the current published literature to identify different stakeholders’ perspectives and recommendations on what exactly should be communicated to members of the public regarding the secondary use of health data for research, how and at what conditions. METHODS Using PRISMA-ScR guidelines, we conducted a scoping review through several bibliographic databases (Medline, CINAHL, PsycINFO, Scopus, Cochrane Database of Systematic Reviews, and PubMed) to locate a broad range of studies published in English or French up to November 2022. We included articles that reported a stakeholder’s opinion or recommendations of what should be communicated to patients or members of the public regarding the secondary use of health data for research, how to communicate the information or at what conditions. Data were collected and analyzed using an iterative thematic approach with NVivo software. RESULTS A total of 178 articles was included in this scoping review. Communication was deemed crucial for many purposes including: a) educating patients and members of the public on the potential benefits; b) giving some control over data use c) as a form of reciprocity and, d) as a condition to build and maintain trust. Elements that should be communicated include generic content such as governance and regulatory frameworks, scientific aims and potential future uses of the data and specific content that is relevant to each person with regards to the use of their data. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content and mixed approaches for specific content including websites, patient portals and face-to-face encounters. Content should be tailored to the individual as much as possible with regards to length, avoidance of technical terms, cultural competence, and level of detail. CONCLUSIONS This review can serve as a foundation for evaluating current communication approaches with regards to secondary use of health data or designing future strategies. Future work will be needed to assess which strategies achieve the greatest outreach while striking a balance between transparency and utilization of resources.

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Government-to-Business (G2B) research data sharing and the GDPR: Reconciling the public with the private?

Cited by 3 publications

References 8 publications

Citizen-Centric Personal Data Storage in The Public Sector: An Exploration of Opportunities, Challenges, and Preconditions

Citizen-Centric Personal Data Storage in The Public Sector: An Exploration of Opportunities, Challenges, and Preconditions

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review (Preprint)

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