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

While unprecedented amounts of multimodal health data become increasingly available and their secondary use in clinical and (bio)medical research holds great promise, people's agency over this data is in contention. In the context of biobank research, patient-centered initiatives such as 'dynamic consent' have been proposed as a way to provide people with ownership over their health data by allowing for granular expression of their consent preferences using a digital interface. Although such interfaces have been positively assessed within their original biobank context, more heterogeneous audiences will need to be considered if such a socio-technical tool is to be adopted widely and provide people ownership over their electronic medical records. One subset of people that will require adjusted functionalities and interaction modalities in this regard are those with a cognitive impairing condition like dementia, given the illness' consequences on decision making capacity. This study qualitatively explores the user & social requirements of a tool like dynamic consent if it is to be used in a meaningful way also by people with dementia and their (informal) carers. We report findings from interviews and an expert focus group with people with dementia, their caretakers, and experts to depict their views and requirements on a tool like dynamic consent.

Inclusion criteria

• no diagnosed cognitive impairment but first-degree relative with AD
• mild cognitive impairment due to AD (diagnosed according to the NIA/AA diagnostic criteria)
• mild dementia due to AD (diagnosed according to the NIA/AA diagnostic criteria)

Exclusion criteria

• Patients with moderate to severe dementia due to AD, defined as MMSE total score 20/30 or lower