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Engagement 2.0 Forms of Consent for Data (re-)Use

Universitair Ziekenhuis Brussel · 2022
ClinicalTrials.gov · Datasets · License: Public Domain · 2022
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alzheimer-diseasemild-cognitive-impairment
The objective of this qualitative study is to create a better understanding of patients' mental model of health data engagement interfaces and tools (such as Dynamic Consent). The researchers will focus especially on those people who - plausibly - require adjusted communication particularities and interaction modalities due to a cognitive impairment stemming from a neurodegenerative disease. Taking into account the specific characteristics of patients with dementia, the goal of this study is to investigate how to communicate according to patients' personal skills and capabilities and identify both the proper support mechanisms for engagement 2.0 consent as well as feedback mechanisms (return of research results). Through a focus group \& interview setup, this study will discern design requirements and propose design recommendations for the (future) development of health data engagement interfaces.
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