Leader: Francesca Ingravallo (UNIBO); Other collaborator(s): UNIMOL/UNIPD
This task will address ethical and legal issues, including data management and protection, to ensure adherence of activities to legal, ethical and safety standards during the whole study. The task will also manage Ethical Committee submission of the study protocol and informed consent procedures and coordinate the involvement of relevant stakeholders (patients, caregivers, healthcare workers, policy makers, etc.). The dissemination plan will ensure maximum interaction with the public and will provide educational material on major issues, including advanced care planning, ad hoc developed for patients with dementia, family members and caregivers, engaging citizens and health professionals by leveraging mass-media and social networks.
Brief description of the activities and of the intermediate results
Activities addressed by WP2 task 6 with respect to the research protocol are the following:
A scoping review on ethical and legal aspects of health monitoring wearable devices (HMWDs), whose protocol was published in Open Science Framework, has been carried out. Data were extracted, and the search on databases was conducted again to identify any relevant article published since the initial search.
Moreover, literature was searched regarding the ethical theme of patient’s information disclosure by caregivers.
Main policy, industrial and scientific implications
The findings of the scoping review may help in guiding healthcare professional in the implementation of HMWDs in healthcare and in the design of clinical trials and also in fostering a greater awareness among everyone interacting with HMWDs, including stakeholders, patients and family caregivers regarding the ethical and legal concerns that exist today and may arise in the future
We have created the final version of the caregiver monitoring application; the debbugging phase is over. In addition, we have continued the activity of engaging the caregiver associations.
We have created the final version of the caregiver monitoring application; the debbugging phase is over. In addition, we have continued the activity of engaging the caregiver associations.
We proceeded with the purchase of the sensors and the part of the application was developed to download the data coming from the sensors.
We have developed the manual for caregivers.
We have carried out awareness-raising events to involve caregivers in the Ravenna and Bologna area (we have planned 3 public meetings for the period September- December) involving caregiver associations and citizens.
We have performed the final test of the entire software and hardware apparatus before starting the enrollement.
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