In this paper we explore the extent to which privacy enhancing technologies (PETs) could be effective in providing privacy to citizens. Rapid development of ubiquitous computing and ‘the internet of things’ are leading to Big Data and the application of Predictive Analytics, effectively merging the real world with cyberspace. The power of information technology is increasingly used to provide personalised services to citizens, leading to the availability of huge amounts of sensitive data about individuals, with potential and actual privacy-eroding effects. To protect the private sphere, deemed essential in a state of law, information and communication systems (ICTs) should meet the requirements laid down in numerous privacy regulations. Sensitive personal information may be captured by organizations, provided that the person providing the information consents to the information being gathered, and may only be used for the express purpose the information was gathered for. Any other use of information about persons without their consent is prohibited by law; notwithstanding legal exceptions. If regulations are properly translated into written code, they will be part of the outcomes of an ICT, and that ICT will therefore be privacy compliant. We conclude that privacy compliance in the ‘technological’ sense cannot meet citizens’ concerns completely, and should therefore be augmented by a conceptual model to make privacy impact assessments at the level of citizens’ lives possible.
BackgroundCritically ill patients are subject to severe skeletal muscle wasting during intensive care unit (ICU) stay, resulting in impaired short- and long-term functional outcomes and health-related quality of life. Increased protein provision may improve functional outcomes in ICU patients by attenuating skeletal muscle breakdown. Supporting evidence is limited however and results in great variety in recommended protein targets.MethodsThe PRECISe trial is an investigator-initiated, bi-national, multi-center, quadruple-blinded randomized controlled trial with a parallel group design. In 935 patients, we will compare provision of isocaloric enteral nutrition with either a standard or high protein content, providing 1.3 or 2.0 g of protein/kg/day, respectively, when fed on target. All unplanned ICU admissions with initiation of invasive mechanical ventilation within 24 h of admission and an expected stay on ventilator support of at least 3 days are eligible. The study is designed to assess the effect of the intervention on functional recovery at 1, 3, and 6 months following ICU admission, including health-related quality of life, measures of muscle strength, physical function, and mental health. The primary endpoint of the trial is health-related quality of life as measured by the Euro-QoL-5D-5-level questionnaire Health Utility Score. Overall between-group differences will be assessed over the three time points using linear mixed-effects models.DiscussionThe PRECISe trial will evaluate the effect of protein on functional recovery including both patient-centered and muscle-related outcomes.Trial registrationClinicalTrials.gov Identifier: NCT04633421. Registered on November 18, 2020. First patient in (FPI) on November 19, 2020. Expected last patient last visit (LPLV) in October 2023.
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During the coronavirus pandemic, the use of eHealth tools became increasingly demanded by patients and encouraged by the Dutch government. Yet, HBO health professionals demand clarity on what they can do, must do, and cannot do with the patients’ data when using digital healthcare provision and support. They often perceive the EU GDPR and its national application as obstacles to the use of eHealth due to strict health data processing requirements. They highlight the difficulty of keeping up with the changing rules and understanding how to apply them. Dutch initiatives to clarify the eHealth rules include the 2021 proposal of the wet Elektronische Gegevensuitwisseling in de Zorg and the establishment of eHealth information and communication platforms for healthcare practitioners. The research explores whether these initiatives serve the needs of HBO health professionals. The following questions will be explored: - Do the currently applicable rules and the proposed wet Elektronische Gegevensuitwisseling in de Zorg clarify what HBO health practitioners can do, must do, and cannot do with patients’ data? - Does the proposed wet Elektronische Gegevensuitwisseling in de Zorg provide better clarity on the stakeholders who may access patients’ data? Does it ensure appropriate safeguards against the unauthorized use of such data? - Does the proposed wet Elektronische Gegevensuitwisseling in de Zorg clarify the EU GDPR requirements for HBO health professionals? - Do the eHealth information and communication platforms set up for healthcare professionals provide the information that HBO professionals need on data protection and privacy requirements stemming from the EU GDPR and from national law? How could such platforms be better adjusted to the HBO professionals’ information and communication needs? Methodology: Practice-oriented legal research, semi-structured interviews and focus group discussions will be conducted. Results will be translated to solutions for HBO health professionals.
