Abstract
Aim: Posthumous electronic healthcare data (PHCD) are ubiquitous and increasing in volume. Despite their potential utility and value, no empirically-derived, publicly-generated information exists to guide what uses society may view as acceptable. This study explores the attitude and perceptions of Aotearoa New Zealanders to PHCD utilisation.
Methods: Focus groups explored topics focused around PHCD utilisation, including family access, consent models, infrastructure, anonymity, governance, and commercialisation. Data were transcribed and general thematic analysis utilised to explore themes and topics.
Results: Sixty-seven people participated across 12 focus groups (mean=50 minutes). Participants indicated conditional support for a centralised, Government-managed PHCD repository allowing controlled, no-cost access for healthcare and research purposes. Public benefit from data was important. Participants prioritised any benefits being preferentially directed to family, then Aotearoa New Zealanders, then others. Commercialisation from data use was viewed as likely and acceptable. Māori PHCD was considered preferably managed by Māori. Participants struggled to define appropriate levels of family access, anonymity, and consent models.
Conclusions: This study delivers the first empirical evidence of social license for PHCD utilisation, providing guidance for establishing trustworthy data governance. Further exploration of the subject is warranted to guide development of frameworks to utilise PHCD in Aotearoa New Zealand.