Engaging the public on health information – the importance of being inclusive, authentic and collaborative

Abstract

Abstract Successful implementation of eHealth solutions will only be realised with the support, confidence and trust of the public. An important step in this process is engagement with the public to understand their expectations and attitudes in relation to the use of their health information. Involving people in important decisions about their health information and ensuring that their rights in relation to health information are upheld is crucial and will ensure that new technologies and initiatives are implemented in a way that is acceptable. Public engagement must be undertaken in a meaningful and authentic way to build trust and confidence. Three core principles must guide public engagement: ensuring each activity is inclusive and reflects a diverse range of views; there must be an openness about the boundaries of influence and intended outcomes; and a focus must be placed on partnership and collaboration, for engaging with the public and sharing learnings with relevant organisations. Public engagement undertaken as part of the ‘OneLondon' programme, one of the UK's most progressive large-scale public deliberation events on health information, highlighted that people expect greater clarity in the intended use of health information. This appeared to be of importance for both healthcare professionals and members of the public. Despite the complexity of particular technologies, people believe there should be transparency about why, by whom, and how health information is collected, used and shared. Transparency is the foundation of building a trusted system. Additional examples of public engagement activities include the establishment of a Citizen's Advisory Group, who explore, discuss and deliberate specific issues to inform future decision-making and policy development. Continued and alternative means of engagement will be necessary to meet future challenges and take advantage of potential opportunities.