Clinical Informatics Approaches to Facilitate Cancer Data Sharing

Aneja, Sanjay; Avesta, Arman; Xu, Hui; Machado, Letícia Rocha

doi:10.1055/s-0043-1768721

Cited by 3 publications

(2 citation statements)

References 50 publications

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“…In the CI survey paper, Aneja et al [16] wrote that despite growing enthusiasm surrounding the utility of clinical informatics to improve cancer outcomes, data availability remains a persistent bottleneck to progress. Difficulty combining data with protected health information often limits our ability to aggregate larger more representative datasets for analysis.…”

Section: One Health and Medical Informaticsmentioning

confidence: 99%

Informatics for One Health

Hollis,

Mougin,

Soualmia

2023

Yearb Med Inform

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Objectives: To introduce the 2023 International Medical Informatics Association (IMIA) Yearbook by the editors. Methods: The editorial provides an introduction and overview to the 2023 IMIA Yearbook where the special topic is “Informatics for One Health”. The special topic, survey papers and some best papers are discussed. The section changes in the Yearbook editorial committee are also described. Results: IMIA Yearbook 2023 provides many perspectives on a relatively new topic called “One Digital Health”. The subject is vast, and includes the use of digital technologies to promote the well-being of people and animals, but also of the environment in which they evolve. Many sections produced new work in the topic including One Health and all sections included the latest themes in many specialties in medical informatics. Conclusions: The theme of “Informatics for One Health” is relatively new but the editors of the IMIA Yearbook have presented excellent and thought-provoking work for biomedical informatics in 2023.

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Section: One Health and Medical Informaticsmentioning

confidence: 99%

Informatics for One Health

Hollis,

Mougin,

Soualmia

2023

Yearb Med Inform

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“…In this edition of the Cancer Informatics section, we continue to focus on translational and clinical cancer informatics, with a special emphasis on data sharing in concordance with the 2023 Yearbook theme. As pointed out by Aneja, et al [1] in the survey paper of the Cancer Informatics section of this IMIA Yearbook, "Despite growing enthusiasm surrounding the utility of clinical informatics to improve cancer outcomes, data availability remains a persistent bottleneck to progress. Difficulty combining data with protected health information often limits our ability to aggregate larger more representative datasets for analysis.…”

Section: Introductionmentioning

confidence: 99%

Cancer Informatics 2023: Data Sharing and Federating Learning Point Towards New Collaborative Opportunities

Warner,

Patt

2023

Yearb Med Inform

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Objective: To summarize significant research contributions on cancer informatics published in 2022. Methods: An extensive search using PubMed/MEDLINE was conducted to identify the scientific contributions published in 2022 that address topics in cancer informatics. The selection process comprised three steps: (i) ten candidate best papers were first selected by the two section editors, (ii) external reviewers from internationally renowned research teams reviewed each candidate best paper, and (iii) the final selection of three best papers was conducted by the editorial board of the Yearbook. Results: The three selected best papers demonstrate advances in federated learning, drug synergy prediction, and utilization of clinical note data. Conclusion: Cancer informatics continues to mature as a subfield of biomedical informatics. Applications of informatics methods to data sharing and federated approaches are especially notable in 2022.

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Decades in the making: A wet lab for digital health and the evolution of research data infrastructure (Preprint)

Austin,

Lobo,

Samadbeik

et al. 2024

Preprint

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UNSTRUCTURED Traditionally, medical research is based on randomised controlled trials (RCTs) for interventions such as drugs and operative procedures. However, increasingly there is a need for health research to evolve. RCTs are expensive to run, are generally formulated with a single research question in mind and analyse a limited data set for a restricted time period. Progressively, health decision makers are focussing on the real-world data (RWD) to deliver large scale longitudinal insights that are actionable. RWD is collected as part of routine care in real-time using digital health infrastructure. For example, understanding the effectiveness of an intervention can be enhanced by combining evidence from traditional RCTs with RWD, providing insights into long-term outcomes in real-life situations. Clinicians and researchers struggle in the digital era to harness RWD for digital health research in an efficient, ethically, and morally appropriate manner. This struggle encompasses challenges such as ensuring data quality, integrating diverse sources, establishing governance policies, ensuring regulatory compliance, developing analytical capabilities, and translating insights into actionable strategies. The same way that drug trials require infrastructure to support their conduct, digital health also necessitates new and disruptive research data infrastructure. Novel methods, such as common data models, federated learning and synthetic data generation are emerging to enhance the utility of research using RWD often siloed across health systems. A continued focus on data privacy and ethical compliance remains. Establishing strong cross-sector collaborations among healthcare and academic institutes will further promote a learning health system. The past 25 years have seen a notable shift from sole emphasis on traditional medical research to the inclusion of modern-day methods, harnessing RWD. This paper describes the evolution of research infrastructure developed to support digital health research and shares the lessons learned as a model for other jurisdictions with similar RWD infrastructure requirements.

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Clinical Informatics Approaches to Facilitate Cancer Data Sharing

Cited by 3 publications

References 50 publications

Informatics for One Health

Informatics for One Health

Cancer Informatics 2023: Data Sharing and Federating Learning Point Towards New Collaborative Opportunities

Decades in the making: A wet lab for digital health and the evolution of research data infrastructure (Preprint)

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