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Navigating Data Protection: Law, Relationships, and Patient-Centricity in Clinical Research

This article explores the intricate landscape of data protection law, emphasizing the relationships between stakeholders in clinical trials and social networks. It discusses the implications of consent forms, the confidentiality of identifiable data, and the balancing of public interest with individual privacy rights. By examining case studies and contextual dependencies, we highlight the challenges of managing data responsibly in health research while ensuring patient-centricity. Key insights into the evolving nature of data relationships and their future associations are provided, making this vital for legal and healthcare professionals.

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Navigating Data Protection: Law, Relationships, and Patient-Centricity in Clinical Research

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Presentation Transcript

  1. map interference lawyer - lawmaker

  2. tree • person(s) • data • associations • implications • relationships with others

  3. (law) pillars… • consent form, exemption guarantees, [static] • confidentiality special relationship • privacy space, relationships, information • data protection principles, [what about contexts] • contracts transfers, sharing • public interest balancing always

  4. Risky people Clinical trials Social networking managed access data driven Sick people Identifiable data Criminal records Police Commercialcompanies informal Clinicians Health records Cohortstudies Socialworkers collaborations Samples hypothesis driven Research data Researchers repositories Commercial companies Small tissue and data collections open access Surveys and censuses formal Healthy people BloodBank Biobanks Members of a population

  5. context ?

  6. data subjects ? data controllers data controllers 28-29 October 2011 Patient-Centricity International Conference, Rome, Italy

  7. boundaries • identifiability and configuration dependency • relationship dependency • no one set of relationships • problem with fixed boundaries • difficulty of ‘absolutes’ • reactive interpretation / contextual integrity? • how to reconfigure?

  8. sum up • protecting something no longer fixed • it is not about the data: it is about context(s) • future associations • relationships (and which interest others)? • case studies

  9. thanks! contacts < cate > catherine.heeney@cchs.csic.es < nadja > nadja.kanellopoulou@ed.ac.uk

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