Data and Intelligence Network: ethics framework

Communications, Engagement and Participation

The ethical dilemmas that are presented in reconciling the need for privacy while ensuring public benefit of managing the COVID-19 pandemic are exceptional, and are such that the World Health Organisation has clearly stated that the public should have a voice, be informed, engaged and be able to participate. In order to maintain trust in Scotland's response to the COVID-19 pandemic, it is therefore critical that the public, and people in the D&IN or who use the products, understand the activity of the D&IN and are able to see that a trustworthy and trusted system is being created.

Therefore, there is a need to proactively communicate and engage people in the work of the D&IN. This will be in order to inform a range of key audiences, including users, researchers, and the public, to share information on research bids at every stage and, where possible, to test the results with both groups who are affected by it and with the general public.

Both a communications and engagement plans will be developed to identify the audiences to whom the work of the D&IN needs to be communicated and the ways that the public might become more involved. This is work that needs to be collaborative: the public-service partner organisations will each have a part to play, as will those undertaking the data analysis or research. It is not for the D&IN to deliver engagement on the research project from the centre, but there may be a valuable role for D&IN partner organisations to develop advice and guidance to help projects to develop effective engagement plans of their own.

Activity needs to promote the work of the D&IN alongside an engagement approach that ensures insights from the public are fed back into the work of the D&IN. An ongoing feedback loop needs to be established to ensure that stakeholders have clear channels that allow them to provide input that is subsequently fed back into activity. It is not the role of the D&IN to undertake all of the engagement on Covid-19, or even on the role that data and information plays in that management. It is also important for an engagement plan to recognise and align this work with other activities already underway in Scotland. These include Scottish Government's work to develop a refreshed Data and Digital Strategy, the work to set out what being an Ethical Digital Nation means, and the development of a long-term strategy for the future of health and social care, all of which will be informed by the impact of Covid-19. In addition, public engagement is important in both local authorities and across the health and social care systems. Nonetheless, the work of the D&IN is an important illustration of how information and data can help us to manage and understand the pandemic. The plan therefore needs to identify key audiences, set standards, identify who will be responsible both for engaging the public and sharing learning within the D∈ and perhaps most importantly identify the kinds of project where engagement will be a high priority, because of their nature or they types of data to be use are contentious or likely to be of concern to the public