Control, Agency, Guardianship: A Human Rights approach to personal data

Mydex CIC publish a paper on embedding a human rights approach within data delivery services.

In Scotland, the Covid Recovery Strategy of October 2021 had the words for people to be at the centre of public services:

Sets out our vision for recovery and the actions we will take to address systemic inequalities made worse by Covid, make progress towards a wellbeing economy, and accelerate inclusive person-centred public services. 

This vision is now being delivered in projects in Clusters across Scotland. It requires a genuine and truly person centred, human rights based approach (HRBA). 

The Mydex CIC White Paper on Control, Agency and Guardianship: A Human Rights Approach to Personal Data sets out how this can be done, and the means and culture for the citizens, carers and communities of Scotland to achieve the vision above.

It is possible to build a personal data ecosystem that is interoperable, local, flexible, sustainable, scalable and that is also safe, secure and consensual, where taking a human rights based approach (HRBA) also results in genuine personal, social and economic benefits.

This is a shift away from an organisation centred approach and to a truly, genuine person centred approach.

The paper outlines the critical issue of data and human rights in services. What it takes to deliver them at a practical level in order to create systemic change, to rebalance the relationship between people, carers and society including critically, the public services they need and are entitled to. Personal data stores (PDS) implement human rights in a practical, innovative, safe, lifelong and secure manner.

This is happening now in a number of Clusters in places across Scotland where the public, third and independent sectors are working together to design and deliver truly person centred services. This is a new approach, with genuine engagement and participation shaping the way people and providers interact, and empowering people in ways that are equal and that change relationships and build trust. 

It is the way to a sustainable system for health, care and other public services in Scotland with the person at the centre in control and able to have relationships that deliver equality and opportunity. This Paper shows how we will achieve the vision set out above.

Please contact Alex Stobart alex@mydex.org, 07595 508 625 if you have any questions.

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