Catalysing Communities Campaigns
To protect and build data rights in the UK
Data and AI are changing our world… community led campaigns can reshape how.
We are running a community data campaigns cohort with five wonderful groups. Together we will be exploring through monthly shared learning sessions, access to 1-to-1 advice, and bespoke expert input ways to advance community led campaigns on data.
About the Community Campaigns on Data Cohort
Communities are affected daily by data governance decisions made by others, whether corporations, local and national government, or civil society organisations, at home, in education, and at work.
They may be made the target of damaging or biassed policies as a result of profiling; miss the opportunity to benefit from cutting edge research by being absent or underrepresented in key datasets; or feel caricatured and disenfranchised through the way data is collected about them. At the same time this is increasingly intensified through the use of AI and automated decision making built on this data, where a lack of transparency and accountability or redress has the potential for even great harms.
Community A group or organisation brought together by geography, identity, or the impacts of particular data and technology …
Campaigns … seeking to bring about a clearly defined change in …
on data … how data is collected, used or governed - so that it better serves community interests.
Care Full
Our campaign for a Care Full economy is focused on shifting our economy to one which is actively designed to enable and centre relationships and acts of care. We believe this will benefit the community of people who care - which includes unpaid carers, parents, legal guardians, foster carers - those who benefit from this support and more. A care full economy is a contrast to our current economic model which individualises care and forces us to care in the margins.
To meaningfully design an economy around care, we need easy to understand data reflecting the role of care in our lives, capturing all the nuance and breadth of experiences. This requires addressing how we capture data on care.
Specifically, we want to co-design definitions of care in the data about our economy, and regular updates to data on the labour market.
Just Treatment
Just Treatment is a patient-led campaign working to ensure patients and the NHS always come before corporate profits. We have been working for a number of years on campaigns to give patients more understanding and say over how their health data is used - and to fight government action that we believe undermines the vital trust patient doctor relationships rely on. We believe that there are real risks to patients and our public health system from having the private sector dominate the development and use of our health data, especially with low levels of accountability and scrutiny of their work.
Through this collaborative work with Connected by Data we aim to identify more patients who have direct experience of the new ways our health data is being used, develop more powerful communication tools explaining the issue to the public, and refine a set of demands that go beyond criticisms of current government policy to defining a vision of alternative governance, regulation, ownership models, and incentives for the use of health data within and beyond the NHS.
No Excuses
No Excuses is focused on preventing childhood online harm by securing tech accountability for young people. Our campaign has been created by a UK based group of campaigners who have experienced online sexual abuse. No Excuses believes that for online harm to be understood and prevented by regulators and government we need participatory data that does not exist now. We want to create community generated data on victims’ experiences of childhood online harms to ensure online safety regulation and policy is grounded in the reality of online harm.
London Renters Union
The London Renters Union (LRU) is a membership organisation consisting of city-wide community of renters. A key issue for our organising efforts in London is the poor state of rental licensing data provided by different local authorities across the city. Improving access to the data and consistency across boroughs would allow members to better hold landlords and estate agents who exploit and mistreat tenants to account. This would grow renter power across the city in our shared struggle to transform the housing system so that it provides decent, safe and affordable homes for everyone.
See Me, Hear Me
Maternity Engagement Action is an organisation based in Birmingham empowering the pregnancy, birth, and postnatal experiences of Black African, Caribbean and Mixed Heritage women. See Me Hear Me is our campaign to ensure the voices and experiences of Black perinatal women are centred in how data is collected about them, where it is held and how it is used. Our aim is to change the current model of research from a ‘done to’ model to a community collaborative approach that is respectful, mindful, and transformational, and counters harmful race and gender biases that are being used to create policies around Black maternal mortality and morbidity.
We want to see the Black perinatal community leading on research around the issues that are affecting them, we want policy makers to see the benefits of community-led research and community driven data and use it in policy development. For there to be real change to the current statistics that Black women are 3.5 times more likely to die than white women during perinatal period we need data from the community affected. Our vision is to work collaboratively with research bodies and the Black perinatal community to create a model where the intersectional voices of Black maternal women are centred, included and amplified in creating and implementing solutions to the issue of Black maternal mortality and morbidity.
Catalysing data communities
This cohort is running from April to September 2024. If you would like to speak to us about this work please contact Tim.
We are particularly grateful to Luminate for their generous help and support for this work.
Resources
Our lives have become digitised. Data about who we are, what we do and the environment we live and work in is collected about us constantly, whether we realise it or not. Whoever controls that data, be that big corporations or governments, has incredible power.
Yet, amid the hype and worry about the data-driven transformation of our world, there is often something conspicuously missing: personal stories. They ground our understanding that this change is not a remote future, but is a reality in progress that is affecting every relationship and interaction we have, as workers, family members, consumers and as citizens.
By hearing the voices of individuals we can better see the impacts of a datafied society. How we are affected is dependent on our individual circumstances, but the power of data is on a societal level. Whether at school, at work or in the justice system, there is a need to bring in this collective voice.
Through these stories, we aim to not only illustrate the reality of the impact of data on our lives, but to point the way towards a different approach, including:
- a focus on the wider impact of the collection and use of data
- rights for all those affected by data-driven decisions
- processes of participation for the public to help shape a datafied society
Our first data stories report focused on people at work. This report, written with Just Treatment, focuses on how people experience data when interacting with health services.