Data and Intelligence Network: ethics framework

An Ethics Framework for the Data and Intelligence Network

The aim of the Data and Intelligence Network is:

to provide a safe, expedient and ethical access to use data and intelligence from across public services in Scotland to effectively manage our response to the public health emergency caused by Covid-19.

Introduction

This Ethics Framework draws on the work of a number of similar frameworks that have been created in recent years at home and internationally. Most notably building on the Caldicott Principles and on the UK Governments Data Ethics Workbook. It does so to ensure consistency of standards, but is framed specifically to meet the immediate needs of the Data and Intelligence Network working in the extraordinary environment of this public health emergency.

What is the Data an Intelligence Network?

The Data and Intelligence Network [D&IN] is a cross sectoral network, brought together by Scottish Government. It brings together partners from central and local government, across health and social care, along with skilled data scientists and academics. The D&IN includes data holders, data users, data analysts, researchers and those managing the pandemic at national and local levels. It was set up in this way, to recognise that managing the pandemic required clear leadership and collaboration from across public services. It aims to help remove barriers to operating collaboratively; this requires people across public services to pool expertise, resources and to align regulation, guidance, systems and processes in the public interest in order to:

• Make accessible data from health and social care, the wider public and private sector and research projects to help inform effective pandemic response at national, local, and sectoral levels and to help evaluate the impact that COVID-19 has on health, care and societal harms.
• Mobilising a network of data and intelligence expertise across local authorities, health boards, Departments of Public Health, Health and Social Care Partnerships, Public Health Scotland, other public bodies, Scottish Government and academia.
• Working with local and regional delivery teams to co-produce rapid, actionable insights, integrating activity across Local resilience partnerships (charged with managing local responses) and the underpinning agencies to ensure sustainability...
• Inform policy making in Scottish Government and across public services ​ to help protect vulnerable populations and minimise the spread of COVID-19 in Scotland by quickly identifying COVID resurgence, clusters, outbreaks and detecting co-circulation with winter respiratory viruses.

The D&IN brought in expertise on ethics, governance, engagement and open government from across disciplines to ensure that the people using the intelligence and data and are making decision are equipped to do so responsibly and with processes, skills and systems of governance in place to support this.

Why do we need an Ethics Framework for the Data and Intelligence Network?

Managing the Covid-19 pandemic effectively means understanding the impact of the virus at national, local and individual level. Scottish Government has published and updated the Coronavirus (COVID-19): framework for decision making along with a range of sector-specific guidance to provide transparent information on the plans to move out of lockdown safely. The routemap in this document shows that the pandemic is more than just a health crisis, it is also a social crisis and an economic crisis that is causing harm on an unprecedented scale. This requires difficult decisions to be made to reconcile these various inter-related harms in order to minimise overall harm. It also recognises that while the virus can affect everyone, the harms caused do not impact everyone equally. This means that using and linking data to understand all of the impacts is vital if we are to protect human rights overall and those most at risk in particular by the effective use of the information. The Data and Intelligence Network was established to provide up to date and accurate information to support decisions as we move through the phases of the routemap. This Ethics Framework is designed to provide a means to address the moral dilemmas that are presented in reconciling the privacy, rights and freedoms of people in Scotland with rapid and proactive, responsible use of information to manage the pandemic.

A public health emergency requires both speed and accuracy of response. In addition, it is the responsibility of public services to share data in ways that mean we can all better understand the whole picture. This is a time when Caldicott principle 7; the duty to share information can be as important as the duty to protect patient confidentiality is entirely relevant. Had it been possible in March and April 2020 to quickly bring together anonymised Covid-19 virus test data, hospital discharge data and care home admissions along with information on staffing, the impacts of the virus on the care home population may have been spotted earlier.

It is also important that making decisions quickly does not diminish the standards for the use of data or intelligence in any way – indeed they become more important as the management of the emergency requires a clear understanding of how people are infected, affected and how the virus is spread. The response must be proportionate to the urgency and threat posed. Which may mean increased surveillance of the population to monitor the virus and the impacts of the pandemic in ways that may be unacceptable at other times. The potential impact of this on public trust cannot be underestimated. It is vital that we can provide reassurance to people about the use of the information they share so we all understand the risks and feel a shared responsibility to act and accept the limitations on our rights and freedoms that may be necessary if we are to keep people safe from the virus. The information needed to manage the Test and Protect system is a particularly sensitive example of this and one that has, in other countries, been the subject of significant public concern. It is therefore important that the way the data is used is both trustworthy and trusted and is seen to be. This requires careful framing of the decision making processes and systems to ensure they embed transparency. It also requires data users to understand the benefit of engaging the public in ways that inform these decisions and so that they can review them, to ensure we have l better informed decision making. The importance of engaging the population is highlighted by the World Health Organisation, which has clearly stated that our communities should have a voice, be informed, engaged and participate in managing the pandemic.