Engaging with the public on their views on the collection, use and sharing of personal health information: Development of a scenario-based survey instrument

Abstract

Background Members of the public differ regarding their views on the use and sharing of personal health information. Objective This paper describes the methodology employed to develop a telephone-based survey tool to capture views of the public on the collection, use and sharing of personal health information. Method A rigorous methodology comprising multiple stages was undertaken to develop a vignette/scenario-based survey instrument. These steps included a review of instruments used in other jurisdictions, focus groups, engagement meetings with healthcare professionals, cognitive testing and piloting the final instrument. Informed by the findings of each survey development phase, draft scenarios and accompanying questions were developed. Results The following scenarios were developed: ‘Circle of care,’ ‘Use of information beyond your direct care’ and ‘Digital records.’ Conclusion The findings from this survey will inform national policy in relation to health information and will inform the development and implementation of eHealth initiatives. In turn, this should support the delivery of high-quality, effective health and social care. The learnings from the development of this survey will contribute to future health information policy and governance in countries or jurisdictions considering the development of a national electronic health record system. Moreover, this research will support public and population health management by encouraging public engagement to support successful implementation of new health information systems.