Trustworthy reuse of health data: A transnational perspective

Geissbühler, Antoine; Safran, C.; Buchan, Iain; Bellazzi, Riccardo; Labkoff, Steve; Eilenberg, K; Leese, A; C, Richardson; Mantas, John; Murray, Peter; Moor, Georges De

doi:10.1016/j.ijmedinf.2012.11.003

Cited by 84 publications

(55 citation statements)

References 6 publications

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“…Experts agree that the benefits to society of data reuse outweigh potential risks [26]. However, issues of privacy and re-identification of personal information can shift any public discussion.…”

Section: Resultsmentioning

confidence: 99%

“…These barriers include ownership or rights to use data, the appropriateness of methods to analyze the data, the propriety of the question being analyzed, the legal context for the analysis, and even the underlying language of the data. The American Medical Informatics Association and the International Medical Informatics Association have held a series of policy-related meetings to provide a framework for discussion of these complex issues [24][25][26][27].…”

Section: Need For Aggregationmentioning

confidence: 99%

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Update on Data Reuse in Health Care

Safran¹

2017

Yearb Med Inform

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SummaryObjective: Reuse of clinical data has broad use in clinical, research, governmental, and business settings. This summary provides an update on the benefits, barriers to use with large clinical databases, policy frameworks that have been formulated, and challenges. Methods: This report highlights some recent publications on the diverse uses of clinical data and some policy initiatives to promote reuse. It also contains the opinions of the author. Results: Although many examples of the benefits of data reuse have been documented, this summary also reviews why the quality of clinical data needs to be the focus of future informatics work. Conclusion: The promise of reusing data outweighs potential risks, but concerns about privacy and the need to modernize our legal framework will be necessary to realize the full benefits of real-world evidence.

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Section: Resultsmentioning

confidence: 99%

Section: Need For Aggregationmentioning

confidence: 99%

Update on Data Reuse in Health Care

Safran¹

2017

Yearb Med Inform

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“…The widespread adoption of EHRs is accelerating through the richer collection of clinical data [43]. In addition, experts agree that EHRs can help achieve integrated health care, optimise health outcomes, reduce errors, curb costs and improve quality of care [44,45].…”

Section: Discussionmentioning

confidence: 99%

Business analysis for a sustainable, multi-stakeholder ecosystem for leveraging the Electronic Health Records for Clinical Research (EHR4CR) platform in Europe

Dupont¹,

Béresniak²,

Sundgren

et al. 2017

International Journal of Medical Informatics

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IntroductionThe Electronic Health Records for Clinical Research (EHR4CR) technological platform has been developed to enable the trustworthy reuse of hospital electronic health records data for clinical research. The EHR4CR platform can enhance and speed up clinical research scenarios: protocol feasibility assessment, patient identification for recruitment in clinical trials, and clinical data exchange, including for reporting serious adverse events. Our objective was to seed a multi-stakeholder ecosystem to enable the scalable exploitation of the EHR4CR platform in Europe, and to assess its economic sustainability. Materials and methodsMarket analyses were conducted by a multidisciplinary task force to define an EHR4CR emerging ecosystem and multi-stakeholder value chain. This involved mapping stakeholder groups and defining their unmet needs, incentives, potential barriers for adopting innovative solutions, roles and interdependencies. A comprehensive business model, value propositions, and sustainability strategies were developed accordingly.Using simulation modelling (including Monte Carlo simulations) and a 5-year horizon, the potential financial outcomes of the business model were forecasted from the perspective of an EHR4CR service provider. ResultsA business ecosystem was defined to leverage the EHR4CR multi-stakeholder value chain. Value propositions were developed describing the expected benefits of EHR4CR solutions for all stakeholders. From an EHR4CR service provider's viewpoint, the 3 business model simulation estimated that a profitability ratio of up to 1.8 could be achieved at year 1, with potential for growth in subsequent years depending on projected market uptake. ConclusionsBy enhancing and speeding up existing processes, EHR4CR solutions promise to transform the clinical research landscape. The ecosystem defined provides the organisational framework for optimising the value and benefits for all stakeholders involved, in a sustainable manner. Our study suggests that the exploitation of EHR4CR solutions appears profitable and sustainable in Europe, with a growth potential depending on the rates of market and hospital adoption.

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“…Clinical data reuse for research purposes is inevitably challenged both by legal and ethical considerations, trying to find a balance enabling scientific research within a framework in which the privacy of patients is protected [3,50,51]. Finally, the sale of clinical data remains an unresolved policy issue [3,21,52].…”

Section: B Motivations and Challenges For Clinical Data Reusementioning

confidence: 99%

“…The American Medical Informatics Association has published a white paper listing recommendations for a national framework for the secondary use of clinical data [3]. A similar European initiative proposed recommendations for the trustworthy reuse of health data [52], and Hersh and colleagues published recommendations [53] and caveats for clinical data reuse in comparative effectiveness research [54].…”

Section: B Motivations and Challenges For Clinical Data Reusementioning

confidence: 99%

Clinical Data Reuse or Secondary Use: Current Status and Potential Future Progress

Meystre¹,

Lovis²,

Bürkle³

et al. 2017

Yearb Med Inform

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SummaryObjective: To perform a review of recent research in clinical data reuse or secondary use, and envision future advances in this field. Methods: The review is based on a large literature search in MEDLINE (through PubMed), conference proceedings, and the ACM Digital Library, focusing only on research published between 2005 and early 2016. Each selected publication was reviewed by the authors, and a structured analysis and summarization of its content was developed. Results: The initial search produced 359 publications, reduced after a manual examination of abstracts and full publications. The following aspects of clinical data reuse are discussed: motivations and challenges, privacy and ethical concerns, data integration and interoperability, data models and terminologies, unstructured data reuse, structured data mining, clinical practice and research integration, and examples of clinical data reuse (quality measurement and learning healthcare systems). Conclusion: Reuse of clinical data is a fast-growing field recognized as essential to realize the potentials for high quality healthcare, improved healthcare management, reduced healthcare costs, population health management, and effective clinical research.

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Trustworthy reuse of health data: A transnational perspective

Cited by 84 publications

References 6 publications

Update on Data Reuse in Health Care

Update on Data Reuse in Health Care

Business analysis for a sustainable, multi-stakeholder ecosystem for leveraging the Electronic Health Records for Clinical Research (EHR4CR) platform in Europe

Clinical Data Reuse or Secondary Use: Current Status and Potential Future Progress

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