Involving people in the use of data for research and official statistics — here’s how
The UK Statistics Authority’s Reema Patel, Associate Director (Engagement) at the Ada Lovelace Institute, lead author of the Institute’s report on participatory data stewardship, and member of the Centre for Applied Data Ethics independent Advisory Committee, considers why this guidance is important for the research and statistical community. Centre for Applied Data Ethics has today released its new draft ethics guidance on considering public views and engagement in research and statistics projects.
The COVID-19 pandemic has highlighted the critical role that data plays at times of emergency. From the importance of timely communication and decentralised data about vaccine uptake, to COVID-19 cases, hospitalisation rates, and the need to rapidly enable regional, local and global coordination, this has been a pandemic in which data and data driven technologies have been central to response and recovery, as well as to underpinning the legitimacy of pandemic measures. Such data has also been crucial in enabling a process of dialogue and accountability with decision makers, mediated by journalists and reporters.
Statistics arising from studies such as the COVID-19 Infection Survey have provided vital information on the number of people getting COVID-19, regardless of whether they have symptoms or not, as well as responses to vaccination. Ensuring that such data is as comprehensive and as accurate as possible enables us to better understand current events and provides an evidence base for policy decisions. To maintain public trust in the use of such data, however, it is important that public views are considered appropriately and the UK Statistics Authority’s new ethics guidance aims to support this process across the research and statistical community.
At the Ada Lovelace Institute, a key focus of our work is understanding and exploring public views regarding the use of data for different purposes, supporting effective engagement with different groups across society to ensure that their views are appropriately listened to, and acted upon, when considering data use and governance.
Our recent report on participatory data stewardship considers the wide range of mechanisms that are available to engage the public on these topics, and the different aims and outcomes that can be achieved with each. It proposes a ‘framework for participatory data stewardship’, which rejects practices of data collection, storage, sharing and use in ways that are opaque or seek to manipulate people, in favour of practices that empower people to help inform, shape and — in some instances — govern their own data.
It also reveals the extent of innovation in this important area — reviewing mechanisms such as data cooperatives in Barcelona and Liverpool, Data Banks on mental health, citizen data impact assessments and audits, as well as co-design and radical transparency mechanisms such as algorithmic registers in Helsinki and Amsterdam. These participatory mechanisms are just as important to consider in relation to the research and statistical context.
There’s an extensive suite of tools and mechanisms available — and our report organises many of those into a framework. However, it isn’t exhaustive as practice is always ahead of research in this space, and the range of mechanisms available means that it is not always easy for researchers and statisticians to understand the best or most resource appropriate way to consider public views within their individual projects.
The guidance that has been published today by the UK Statistics Authority’s Centre for Applied Data Ethics aims to address this issue — providing a practically-focused guide that considers the different ways in which public views can be understood and explored for research or statistical projects and when these different approaches may be applicable and beneficial.
This ranges from simply disseminating information via different methods, to undertaking polling, surveys or focus groups to understand and gather views, or engaging in more participatory methods that allow in-depth consultation and contribution to decision-making processes, such as citizen panels. It represents a first step that should be undertaken when starting out on any research project, with initial guidance provided alongside signposting to a range of further resources and initiatives where required.
There is much existing work exploring public views related to data use and a growing number of initiatives focused on this area. This is testament to the importance of adequately considering the diverse views of different publics across our society in the work that we do, no matter how small a project may be. The recently released report of the Inclusive Data Taskforce also highlights the importance of appropriately engaging with diverse sections of society in order to maximise the inclusivity of data going forward. Indeed, retaining the public’s trust in the use of data by the research and statistical community is vital if we are to continue to produce comprehensive research and statistics that maximise the public good benefits that can be achieved across society.
The UK Statistics Authority’s new guidance provides a user-friendly way for researchers and statisticians to identify and engage with some of this work, providing a helpful resource that enables them to engage with the range of perspectives, materials and opportunities that are available to them when considering public views and engagement in their work.
Feedback on this guidance: This guidance has been published as an open draft for comment and feedback from the research and statistical user community. If you have any feedback on this guidance, particularly how useful you have found it in the context of the work that you do, please contact the UK Statistics Authority’s data ethics team.
Originally published at https://uksa.statisticsauthority.gov.uk.