6.G. Workshop: Developing a consent model for health information – challenges in a rapidly changing digital world

Abstract

Abstract   Advances in eHealth and digital technologies have the potential to improve the quality of patient care and promote efficiency across a health service. The potential benefits have often not been realised, however, due to a sometimes greater focus on organisational needs rather than pursuing a person-centred approach. There are some concerns from the public in relation to the privacy and security of data, issues in relation to digital literacy and inadequate digital infrastructure, and the potential erosion of the patient-healthcare professional relationship. The introduction of new information systems requires clarity around consent to align with good information governance practices and support people's rights and involvement in relation to health information decisions. Internationally, the successful introduction of digital technologies in healthcare have been informed by effective public engagement and involvement from the outset. Public engagement helps to build trust and confidence in relation to health information use, and gives insight into important considerations for the development of a consent model. As part of this workshop, we will share the experiences of three different European countries who are at varying stages of development and implementation of eHealth solutions. Ireland is at the early stages of transition to a more digital healthcare service. In England, there are a number of eHealth systems in place although difficulties have been experienced at stages; understanding public expectations and involving the public in decision-making has been an important component of their progress. Estonia is recognised as a leader in eHealth and has much to offer in relation to the fundamental principles of successful implementation. The objectives of this workshop are to: 1) share experiences in relation to the process of public engagement across different contexts; 2) examine the eHealth landscape in relation to health information sharing; and 3) lead a discussion on the opportunities and challenges faced for the future of health information in a digital world. This workshop will be comprised of three presentations, from each of the above country perspectives, followed by a panel discussion with contributions invited from the audience. Key messages Building public trust, via public engagement, is essential for successful implementation of digital health technologies. Digital health can transform future health systems but success requires strong national leadership, information governance, robust standards, consent management, and access rights.