Co-design In The Time Of Covid 19: Power, Privacy & Sovereignty
By The Lab Team
Co-authored by Lee Ryan & Jacob Otter
Post 2: Across three posts, we address some of the emerging ethical issues of doing research and co-design in the context of COVID-19 and social distancing. Read post 1: Preparing for ethical research co-design practice in a covid19 context
In this blog post we look at power, privacy and data sovereignty and explore ways in which they may be intensified in the context of COVID 19.
As a technique for building a service or programme, co-design is inherently about sharing of power and influence, increasing impact by working with people, whānau and stakeholders as active agents, collectively designing and implementing new ways of working and doing. Co-design is not neutral; it is strongly focused on changing the status quo. Who defines problems and how they are defined, is as important as the shaping of any solutions. Questions of power include who is invited to be involved, on whose terms? Whose voice is heard and whose is not? What influence do people have over outcomes and decision-making? Issues of participation, how relationships are held, negotiating concepts of confidentiality and privacy are central to co-design.
However, codesign, along with other research practices, share a history of not getting it right. This has been the experience of many groups who have been researched, especially Māori. For codesign and research practitioners in Aotearoa NZ, the Treaty of Waitangi provides an approach to consider ethics through the principles of partnership, participation and protection, and the perspective of relationships and reciprocity [1]. It lays out the basis for power sharing with Māori, while also ensuring mana motuhake (autonomy). Māori Data Sovereignty is an explicit demonstration of this from the perspective of digital data and rights, and talks to governance as well as data use [2]. It makes clear the power in data and of its ownership, use and the structures through which control of data is exercised.
Under COVID19 questions of power, privacy and data governance are heightened. There is a LOT of data being gathered about people right now from research projects, to sign in sheets to new apps. There is also mass uncertainty and much more stress about current livelihoods and the future. How do we begin to think about power, collaboration, data sovereignty in this context? We don’t have answers, but want to provide some thoughts and provocations to help raise our sensitivity to these issues at this time.
For example, new considerations about power appear as people are suddenly impacted and under significant stress, how does this impact their capacity to participate or to give informed consent? The broader landscape has become busier with different teams in different organisations wanting to collect data and identify potential impacts. People are inadvertently caught up in new services and there can be a blurring between getting feedback about operational activities (eg providing support to families) and collecting ‘research data’ especially when it isn’t clear how data will be used later on. Whether it is taking photos of people, capturing data on sign in sheets or gathering stories at the frontline, we need to consider issues of meaningful consent, data privacy and sovereignty.
The use of different video platforms, like zoom, also raise new questions around privacy. Many of us have carried on co-design and research initiatives whilst in lock down. But when we are zooming into people’s lounges and bedrooms what additional considerations does this raise for privacy and safety? How might we manage additional people joining in when consent has not been given. Are there aspects of people’s lives they are inadvertently sharing that they might not otherwise? Other specific new technology concerns include the safety of the platform itself with the incidence of zoom bombing. The use of 3rd party platforms also means agreeing to privacy and data terms and conditions of a third party with their own agendas around data use and different levels of data security.
As institutions gather much more data about people in crisis, there are ongoing privacy questions to answer. What platforms are we using and why? What is stored, where are records kept, who gets access and what processes are in place? What additional issues are introduced through new platforms. These concerns also need to be balanced with how people want and are able to participate? What are people comfortable with and what is accessible to people. How do we avoid using up people’s data caps or incurring extra costs for families. How do we make and share decisions about the choice of what to capture and what to keep - does it need to be video, how might we use audio?
This intensified data collection also raises the question of data sovereignty. How do we meaningfully consider Māori data sovereignty in this context? So much data being gathered and stored - there is the potential to think that getting the information is too important right now to take the time to think things through fully. A key question is how are we setting up the governance of the data? If there is lots of data being collected - who is consulted? How will it be cared for?
ONE PRACTICAL APPLICATION - CONSENT UNDER COVID?
Questions of power, privacy and sovereignty are embodied in ‘things’, such as consent forms, digital platforms and infrastructures, data points and decision making processes. One example is the different ways we now negotiate consent. Teams are working on the fly to make up new kinds of research approaches. If we are not meeting face to face, we have to identify different ways to manage consent. We know that people find it more difficult to process information as our brains go into survival mode or when in a crisis. It becomes even more necessary to chunk our information, and present it in more accessible ways (more visual, more concrete). And if we know that it is harder to give consent or make a whole lot of decisions at once when so much is happening both inside our households and out in the world.
Often in research consent is gained through signing of a consent form at the beginning of a process. The relationship is transactional with it starting and ending with the thing you are engaging on. To give effect to power sharing and autonomy in the co-design process, we have been working with a more relational and ongoing approach to consent - checking in as we go that people are still comfortable to engage, to share, with what is being captured and how it is being used. As well as having whānau themselves shape these things.
Relational consent is based on a partnership between people in the process, and an intent that knowing that while the project starts and ends that is happening within the context of a more ongoing connection. The table below contrasts a more traditional process with this form of relational consent, which feels responsive to an environment to an environment of uncertainty, where people may not know exactly what they are agreeing to at the beginning, or how things might change for them as time goes on over the co-design process.
| Traditional Consent | Relational Consent |
|---|---|
|
Physical paper Sign once Often Complex, writing One way consent Legalistic Conditional Asking permission once Assumes data ownership |
Many forms (audio, text, video) Ongoing checking/agreement Simple, words and visuals Mutual consent - i.e we both consent Reciprocal Empowering whānau to make decisions along the journey Opens up the question of data ownership |
Each time we engage with people is a moment for power to be reassessed, renegotiated, and regenerated. The tools we use embed decisions and power within them and are one of many points we pause to consider how issues of power, privacy and sovereignty are being enacted through research and co-design processes. These are issues we are grappling with, as we look to find practical and meaningful ways to value each person and their particular lives, hopes and aspirations inside each co-design journey.
[2] https://www.temanararaunga.maori.nz/
Further ReadingMāori Data Sovereignty Network https://www.temanararaunga.maori.nz/
Te Ara Tika Guidelines for Maori Research Ethics https://www.hrc.govt.nz/resources/te-ara-tika-guidelines-maori-research-ethics-0
Taiuru, K. 2020. Treaty of Waitangi/Te Tiriti and Māori Ethics Guidelines for: AI, Algorithms, Data and IOT. Retrieved from http://www.taiuru.Maori.nz/TiritiEthicalGuide.
Stats NZ establishes data ethics advisory group https://www.stats.govt.nz/news/stats-nz-convenes-data-ethics-advisory-group
Innovate for Impact Blog Series: On Power Privilege and Possibilities https://blogs.rch.org.au/ccch/2019/04/12/theme-3-on-power-privilege-and-possibilities/
When Love Meets Power Written by Charles Leadbeater in collaboration with The Australian Centre for Social Innovation
”Power at its best is love implementing the demands of justice, and justice at its best is power correcting everything that stands against love.”—ML King Jr.
Thanks to our colleagues for their thoughtful contributions and peer review.