JMIR Publications

ABSTRACT

Background:

‘Ubiquitous’, ‘smart’ computing technology has the potential to assist humans in numerous ways, including health and social care. Covid-19 has notably hastened the move to remote delivery of many health services. Development of technology involves a variety of stakeholders in the process of testing, refinement, and evaluation. Where stakeholders are research participants, this poses practical and ethical challenges, particularly if the research is situated in people’s homes. Researchers must observe prima facie ethical obligations linked to participants’ interests in having their autonomy and privacy respected.

Objective:

This research explores ethical considerations around consent, privacy, anonymisation and data-sharing with participants involved in SPHERE, a project developing smart technology for monitoring people’s health behaviours at home. Their unique insights from being part of this unusual experiment offers valuable perspectives on how to properly approach informed consent for similar smart home research in the future.

Methods:

Semi-structured qualitative interviews (with adults and children) were conducted with 7 households/16 participants recruited from SPHERE. Purposive sampling was used to invite participants from a range of household types and ages. Interviews were conducted in participants’ homes or on-site at the University of Bristol. Interviews were digitally recorded, transcribed verbatim and analysed using an inductive thematic approach.

Results:

Four themes were identified: (1) motivations for participating; (2) transparency, understanding and consent; (3) privacy, anonymity, and data use; and (4) trust in research. Motivations to participate in SPHERE stemmed from an altruistic desire to support research directed towards the public good. Participants were satisfied with the SPHERE consent process despite reporting some difficulties: recalling and understanding information received; the timing and amount of information provision; and sometimes finding the information to be abstract. Participants were also satisfied that privacy was assured and judged that reasons for conducting the research compensated for threats to privacy. Participants trusted the project and the team. Factors relevant to developing and maintaining this trust were the trustworthiness of the research team, provision of necessary information, the control participants had over participation, and positive prior experiences of research involvement.

Conclusions:

This small study offers valuable insights into the perspectives of participants in smart home research on important ethical considerations around consent and privacy. The findings might have practical implications for future research regarding the types of information researchers should convey, the extent to which anonymity can be assured, and the long-term duty of care owed to participants who place trust in researchers not only on the basis of this information, but also because of their institutional affiliation. This study highlights important ethical implications: although autonomy matters, trust appears to matter most. Researchers should therefore be alert to the need to foster and maintain trust, particularly as failing to do so might have deleterious effects on future research.