WhatWeNeed is delight to have the opportunity to distribute the paper (alongside the Money Advice Trust), Ten Principles for Designing Vulnerable Consumer Data-sharing Programmes, which you can download here.
This much needed paper comes at a key moment when data sharing is being made a priority by so many institutions and service providers as they and consumers alike are aware of the inconsistent provision of support and the increasing demand on the time and energy of those who have least of either; is increasingly technologically possible; has so many implications for the development of other technologies such as machine learning; and when disabled people in particular increasingly feel that their ability to make choices about their own lives is being taken out of their hands.
All of these factors mean data sharing done right could revolutionise people’s access to the services they use every day. While data sharing done without putting the lived experience of disabled and vulnerable consumers at the heart of its design risks disenfranchising and alienating a whole generation of consumers, leaving them without trust in the systems on which they rely, without the resources to live the fullest possible lives, and without the services they should be able to take for granted.
We hope this paper provides anyone who has an interest in data sharing with principles they can follow to stand the best possible chance of getting it as right as possible.
The paper is co-authored by WhatWeNeed’s Chris Fitch and Dan Holloway alongside 10 other co-authors who specialise in data sharing and vulnerability:
Christine Tate (MBA) is Manging Director of Partnerships for Good Ltd. C
Dr Elizabeth Blakelock is an inclusion specialist.
Faith Reynolds works in an advisory capacity across a range of fintech, Smart Data and Open
Finance initiatives.
Jo Giles is a specialist in achieving change on vulnerability and accessibility in essential services.
Johnny Timpson OBE has lived experience of disability and is a Financial Inclusion
Commissioner and a member of both the Building Resilient Households Group and GAIN (the
Group for Autism, Insurance, Investment and Neurodiversity).
Kevin Still is a director of trade body DEMSA, a Non Executive Director for the Vulnerability Registration Service (VRS), and part of the HM Treasury Fairness Group,
Lee Healey is the founder and CEO of IncomeMax,
Dr Shani Dhanda is a Multi-Award-Winning Disability Inclusion & Accessibility Consultant,
Broadcaster & Social Entrepreneur,
Steve Crabb is an independent chair and non-executive director specialising in improving the
experience of customers in the utility sector in general, and those with additional service needs
in particular.
Vanessa Northam is Head of Charity Development at StepChange
What We Need 