The Future: Overcoming the Barriers to Using NHS Clinical Data For Research Purposes

International perspective for sharing publicly funded medical research data

Clinical trials data sharing

Actsi bip overview jan 2011

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The document outlines the aims and progress of the Biomedical Informatics Program at the Atlanta Clinical and Translational Science Institute. The four main aims are to: 1) develop a federated system to link research databases, 2) deploy applications for clinical data management and analysis, 3) engage investigators in using informatics resources, and 4) enhance informatics training. Recent progress includes deploying several clinical registries and data repositories. Future plans include further integrating resources between partner organizations and leveraging over $3.8 million in funding.

Personalized Medicine with IBM-Watson: Future of Cancer care

jetweedy

Watson for Genomics uses IBM's Watson cognitive computing system to help personalize cancer care. It analyzes genomic sequencing data and clinical records to provide treatment suggestions and clinical trial matches for patients in minutes, compared to weeks for traditional approaches. Researchers are finalizing the algorithm and testing it in clinical trials. Watson draws from a large corpus of medical literature and patient data to understand questions, generate hypotheses, and provide evidence to support its answers. It could help reduce health professionals' workload and improve access to care, though challenges remain in developing the algorithm and acquiring sufficient data sets.

NCRIS and the health domain

The document provides an overview of the Research Capability Programme (RCP) which aims to enable use of NHS data for research purposes. It discusses the RCP's enabling phase where governance structures and stakeholder engagement were established. The implementation phase will develop infrastructure to provide research support services including access to data sources, cohort management, and anonymization/coding of data. Key challenges include ensuring opportunities are maximized, improving data linkage and quality, and navigating complex information governance issues.

Clinical trials and cohort studies

An infrastructure for clinical data extraction, medical knowledge and mining ...

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This document proposes an infrastructure for facilitating quality healthcare through gathering clinical data, discovering knowledge from the data, and sharing knowledge and mining services. The infrastructure includes modules for data preprocessing, analyzing, representation, and sharing clinical data, mining services, and medical knowledge. It was adopted in a project on liver cancer to gather and extract clinical data, select cases for mining modules, compare treatment strategies to clinical guidelines, and could be reused for other research subjects.

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Health Informatics

adityadineshsaxena

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Almaden presentation 15-dec-2015

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Investigator-initiated clinical trials: a community perspective

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Embi cri review-2013-final

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Introduction to ADA

Working Effectively with Medicare Data: Limits and Opportunities

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Clinical Research Informatics (CRI) Year-in-Review 2014

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Margaret Henderson

The document discusses several open data and data sharing policies from government agencies and academic institutions. It summarizes the NIH public access policy, which requires researchers receiving NIH funding to submit final peer-reviewed manuscripts to PubMed Central. It also discusses the NIH and NSF data sharing policies, which require investigators to share data. The document outlines the objectives of the OSTP memorandum to increase public access to federally funded research results. Key points include developing data management plans and allowing costs for data preservation and access in funding proposals. Reasons for data sharing include validating results and enabling new research. Examples of shared epidemiological and clinical trial data are provided.

4 Cs of collaboration – Capturing the benefits of social technologies

The document discusses collaboration using social technologies. It outlines the 4Cs of collaboration as community, communication, coordination, and co-creation. It then discusses benefits like improved business collaboration and employee motivation. It highlights challenges like lack of integration into workflows and lack of leadership buy-in. Finally, it summarizes Zipipop's client process for helping companies implement successful social collaboration strategies.

The Atos Social Collaboration Story Robert Shaw

University Health and Medical Librarians Group

The document discusses three levels of leadership that were important for Atos's successful social collaboration transformation: leadership from the top to establish strategy and set an example, leadership from grassroots employees to normalize and personalize the change, and leadership from middle management to implement social project management, helpdesk, and ideation tools. The transformation benefited Atos's customers and allowed various teams within the company to improve processes like asking SAP experts questions, incident management, and monthly finance reviews.

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