Our data, our society, our health: A vision for inclusive and transparent health data science in the United Kingdom and beyond

Ford, Elizabeth; Boyd, Andy; Bowles, Juliana; Havard, Alys; Aldridge, Robert W; Ćurčin, Vasa; Greiver, Michelle; Harron, Katie; Katikireddi, Vittal; Rodgers, Sarah; Sperrin, Matthew

doi:10.1002/lrh2.10191

Cited by 49 publications

(56 citation statements)

References 58 publications

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“…In recent years, medical/health data science and practices are among the issues that are carefully emphasized by various government agencies as well as private companies (Goulooze et al 2019;Paul et al 2017;Paul et al 2016;Ford et al 2019;Dixon et al 2020;Dammann and Smart 2019). Image processing methods are also one of the basic algorithms used when developing these software solutions and applications.…”

Section: Introductionmentioning

confidence: 99%

RETRACTED ARTICLE: A topic-based hierarchical publish/subscribe messaging middleware for COVID-19 detection in X-ray image and its metadata

Eken

2020

Soft Comput

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Putting real-time medical data processing applications into practice comes with some challenges such as scalability and performance. Processing medical images from different collaborators is an example of such applications, in which chest X-ray data are processed to extract knowledge. It is not easy to process data and get the required information in real time using central processing techniques when data get very large in size. In this paper, real-time data are filtered and forwarded to the right processing node by using the proposed topic-based hierarchical publish/subscribe messaging middleware in the distributed scalable network of collaborating computation nodes instead of classical approaches of centralized computation. This enables processing streaming medical data in near real time and makes a warning system possible. End users have the capability of filtering/searching. The returned search results can be images (COVID-19 or non-COVID-19) and their meta-data are gender and age. Here, COVID-19 is detected using a novel capsule network-based model from chest X-ray images. This middleware allows for a smaller search space as well as shorter times for obtaining search results. Keywords Capsule networks Á Topic-based hierarchical publish/subscribe Á COVID-19 detection Á Hybrid intelligence Á X-ray images Á Medical data management Communicated by Valentina E. Balas.

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Section: Introductionmentioning

confidence: 99%

RETRACTED ARTICLE: A topic-based hierarchical publish/subscribe messaging middleware for COVID-19 detection in X-ray image and its metadata

Eken

2020

Soft Comput

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“…data to promote transparency of such schemes and inclusivity of all stakeholders. 16 Stakeholder reviews on why care. data went wrong have focused on patient and public views A body of literature has built up which has looked at themes in the public's objections to care.…”

Section: Open Accessmentioning

confidence: 99%

“…Given the high likelihood of similar schemes being launched in the near future, it is imperative that as many lessons as possible are learnt from care.data to promote transparency of such schemes and inclusivity of all stakeholders. 16 …”

Section: Introductionmentioning

confidence: 99%

Media content analysis of general practitioners’ reactions to care.data expressed in the media: what lessons can be learned for future NHS data-sharing initiatives?

et al. 2020

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ObjectivesCare.data was a 2013 UK government initiative to extract patient data from general practices in England to form a centralised whole-population database for service planning and health research. After a public outcry, the scheme was postponed and cancelled. Public views of care.data have previously been analysed; this study aimed to understand contemporary general practitioners’ (GPs) views of the scheme, which may have been influential in its downfall.DesignSystematic search of media articles, followed by media content analysis.SettingUK-based mainstream and GP-facing media in 2013 and 2014.ParticipantsArticles were eligible if they focused on care.data, and GPs were quoted, authored the article, or if articles were written for a majority GP audience.InterventionsN/A.Primary and secondary outcome measuresThemes which explained GPs' reactions to care.data and which could explain support for or opposition to the scheme.Results162 media articles met inclusion criteria and were drawn from newspapers, news websites and GP-facing websites. GPs recognised care.data’s potential value for research and improving care, but had grave concerns about the scheme’s implementation. These centred the lack of safeguards and purpose around the scheme which meant patients were not able to make informed decisions about opt-out. GPs perceived they were poorly resourced to meet competing demands to both share patients’ data and protect confidentiality. They distrusted the government’s likely uses of the data and perceived a risk of patient reidentification if the data were sold onto commercial entities.ConclusionsFindings show specific concerns which GPs had about care.data which led to the withdrawal of support. Future NHS patient data-sharing schemes should engage with GPs and other clinicians as key stakeholders from the earliest moments of planning, so that their views and needs are incorporated into the design of such schemes.

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“…CDW hold responsibility over data stewardship [16], meaning the management and oversight of data, playing a crucial role in making stored clinical data accessible and (re)usable. With the multiplying promises of data-intensive research, the governance of data access and use gains an ethical dimension whose relevance is debated internationally [4,17,18].…”

Section: Introductionmentioning

confidence: 99%

Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies

Pavlenko

Strech

Langhof

2020

BMC Med Inform Decis Mak

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Background: The promises of improved health care and health research through data-intensive applications rely on a growing amount of health data. At the core of large-scale data integration efforts, clinical data warehouses (CDW) are also responsible for data governance, managing data access and (re)use. As the complexity of the data flow increases, greater transparency and standardization of criteria and procedures are required in order to maintain objective oversight and control. Therefore, the development of practice oriented and evidence-based policies is crucial. This study assessed the spectrum of data access and use criteria and procedures in clinical data warehouses governance internationally. Methods: We performed a systematic review of (a) the published scientific literature on CDW and (b) publicly available information on CDW data access, e.g., data access policies. A qualitative thematic analysis was applied to all included literature and policies. Results: Twenty-three scientific publications and one policy document were included in the final analysis. The qualitative analysis led to a final set of three main thematic categories: (1) requirements, including recipient requirements, reuse requirements, and formal requirements; (2) structures and processes, including review bodies and review values; and (3) access, including access limitations. Conclusions: The description of data access and use governance in the scientific literature is characterized by a high level of heterogeneity and ambiguity. In practice, this might limit the effective data sharing needed to fulfil the high expectations of data-intensive approaches in medical research and health care. The lack of publicly available information on access policies conflicts with ethical requirements linked to principles of transparency and accountability. CDW should publicly disclose by whom and under which conditions data can be accessed, and provide designated

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Our data, our society, our health: A vision for inclusive and transparent health data science in the United Kingdom and beyond

Cited by 49 publications

References 58 publications

RETRACTED ARTICLE: A topic-based hierarchical publish/subscribe messaging middleware for COVID-19 detection in X-ray image and its metadata

RETRACTED ARTICLE: A topic-based hierarchical publish/subscribe messaging middleware for COVID-19 detection in X-ray image and its metadata

Media content analysis of general practitioners’ reactions to care.data expressed in the media: what lessons can be learned for future NHS data-sharing initiatives?

Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies

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