Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

Shah, Nisha; Johansson, Jennifer Viberg; Haraldsdóttir, Eik; Bentzen, Heidi Beate; Coy, Sarah; Mascalzoni, Deborah; Jonsdottir, Gudbjorg; Kaye, Jane

doi:10.1016/j.ijmedinf.2021.104623

Cited by 10 publications

(9 citation statements)

References 31 publications

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“…Health information counseling services may be especially relevant for decisions concerned with the use of one's data for purposes other than those for which it was originally collected. The reuse of health data can occur in contexts with norms and values different from those upheld in research and care settings and which are more often subject to “data trust deficits” ( 71 ). Commercial settings such as direct-to-consumer genetic testing companies are one such example where values such as transparency and reciprocity may be overridden by economic interest (e.g., patenting consumer data that was first shared under the pretense that it would be used to democratize genomics) [see ( 72 )].…”

Section: Discussionmentioning

confidence: 99%

Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions

Nwebonyi

Silva

Freitas

2022

Front. Public Health

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BackgroundData-intensive and needs-driven research can deliver substantial health benefits. However, concerns with privacy loss, undisclosed surveillance, and discrimination are on the rise due to mounting data breaches. This can undermine the trustworthiness of data processing institutions and reduce people's willingness to share their data. Involving the public in health data governance can help to address this problem by imbuing data processing frameworks with societal values. This study assesses public views about involvement in individual-level decisions concerned with health data and their association with trust in science and other institutions.MethodsCross-sectional study with 162 patients and 489 informal carers followed at two reference centers for rare diseases in an academic hospital in Portugal (June 2019–March 2020). Participants rated the importance of involvement in decision-making concerning health data sharing, access, use, and reuse from “not important” to “very important”. Its association with sociodemographic characteristics, interpersonal trust, trust in national and international institutions, and the importance of trust in research teams and host institutions was tested.ResultsMost participants perceived involvement in decision-making about data sharing (85.1%), access (87.1%), use (85%) and reuse (79.9%) to be important or very important. Participants who ascribed a high degree of importance to trust in research host institutions were significantly more likely to value involvement in such decisions. A similar position was expressed by participants who valued trust in research teams for data sharing, access, and use. Participants with low levels of trust in national and international institutions and with lower levels of education attributed less importance to being involved in decisions about data use.ConclusionThe high value attributed by participants to involvement in individual-level data governance stresses the need to broaden opportunities for public participation in health data decision-making, namely by introducing a meta consent approach. The important role played by trust in science and in other institutions in shaping participants' views about involvement highlights the relevance of pairing such a meta consent approach with the provision of transparent information about the implications of data sharing, the resources needed to make informed choices and the development of harm mitigation tools and redress.

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Section: Discussionmentioning

confidence: 99%

Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions

Nwebonyi

Silva

Freitas

2022

Front. Public Health

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“…A narrative review of the literature highlights the fact that social licenses for data-intensive health research cannot be assumed [205]. Trust and its absence had a considerable impact on the acceptance of the secondary use of health data without specific consent [136,191,198]. Muller et al [206] emphasized the merits of using the concept of social license as a reference for ethical governance and highlighted the strategic importance of dialogue with patients and members of the public.…”

Section: Interpretation Of Findingsmentioning

confidence: 99%

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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Section: Literature Reviewmentioning

confidence: 99%

“…Health-related data have travelled across boundaries between research, commercial and marketing contexts. Such cross-border sharing of data may potentially violate the expectations regarding the appropriate use of the data and erode public trust (Shah et al. , 2021).…”

Section: Literature Reviewmentioning

confidence: 99%

“…Technology in itself is neither good nor bad, but the purpose for which is applied may be beneficial or harmful to individuals or society (Pitt, 2019). Similarly, the data sharing phenomenon has positive advantages (understanding the subtle differences in individual behaviours, lifestyles and health, assisting healthcare providers to monitor and treat disease (Shah et al, 2021), enhancing transparency between healthcare providers and patients to better chronic disease management (Dinh-Le et al, 2019)) but may also cause harm (prejudicial treatment for insurance and employment, identity theft and blackmail (Slepchuk et al, 2022), compromising optimal treatment through drug promotion when medicines-related app data are commercialised (Grundy et al, 2019b), even undermining the free market (Pagliari, 2019).) Healthrelated data have travelled across boundaries between research, commercial and marketing contexts.…”

Section: Literature Review 21 the Duality Of Data Sharingmentioning

confidence: 99%

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The structure and information spread capability of the network formed by integrated fitness apps

Vermeulen

Grobbelaar

2022

ITP

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PurposeIn this article we aim to understand how the network formed by fitness tracking devices and associated apps as a subset of the broader health-related Internet of things is capable of spreading information.Design/methodology/approachThe authors used a combination of a content analysis, network analysis, community detection and simulation. A sample of 922 health-related apps (including manufacturers' apps and developers) were collected through snowball sampling after an initial content analysis from a Google search for fitness tracking devices.FindingsThe network of fitness apps is disassortative with high-degree nodes connecting to low-degree nodes, follow a power-law degree distribution and present with low community structure. Information spreads faster through the network than an artificial small-world network and fastest when nodes with high degree centrality are the seeds.Practical implicationsThis capability to spread information holds implications for both intended and unintended data sharing.Originality/valueThe analysis confirms and supports evidence of widespread mobility of data between fitness and health apps that were initially reported in earlier work and in addition provides evidence for the dynamic diffusion capability of the network based on its structure. The structure of the network enables the duality of the purpose of data sharing.

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Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

Cited by 10 publications

References 31 publications

Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions

Public Views About Involvement in Decision-Making on Health Data Sharing, Access, Use and Reuse: The Importance of Trust in Science and Other Institutions

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

The structure and information spread capability of the network formed by integrated fitness apps

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