A human rights approach to personal data

Human rights have become a big thing in Scotland, and rightly so. Why shouldn’t people be treated with the dignity and respect they deserve? However, it’s easier to talk about these rights than do them and that’s a problem.

*The following guest blog has been written by Alan Mitchell, Chair, Mydex CIC

Starting with Backpack, a 2015 project with NHS Grampian and DHI, we (Mydex CIC) have been working with DHI to develop ways to operationalise human rights as they relate to personal data - and therefore, to the services that this data enables. We’ve just published a paper on Control, Agency, and Guardianship that sums up our learnings.

Here are some of our findings.

First, beware talk of ‘user centric service design’. It sounds great, but, by definition, a ‘user’ is a person using a particular service: ‘user centricity’ never looks at a person in the context of their life, only at one particular interface with one particular organisation. A user-centric approach to design may make it easier and simpler to fill out a form. But individuals have to fill in countless different forms and their real need is to be liberated from the very fact of form filling itself.

Likewise, ‘control’ over data. This is usually interpreted to mean individuals being able to exercise control over the data that a particular organisation collects about them. But this does nothing to help them in relation to all the different organisations they deal with, which is what real control is about.

Without agency, ‘control’ can be meaningless, and the locus of human agency doesn’t lie within the systems of this or that organisation but within the individual’s life. It means providing individuals with the means to achieve safety, fairness, utility, simplicity and agency in all their data dealings, for example with their own personalised cockpits or dashboards that enable them to manage all their data relationships from one place.

The figure below, from a recent DHI report, highlights just how important this context-aware person-centric approach is, as reinforced in the Scottish Digital Health and Care Strategy.

In the context of health and care, ‘guardianship’ is a crucial part of this. There are millions of people in the UK today, such as the old, frail or ill, or young people in care, who are not able to act fully and completely on their own behalf: who need someone to act for them in ways big and small. It is precisely in such situations that what little control and agency they have left becomes all the more important to them.

Current ways of handling such delegate powers are not fit for purpose. They are either too legalistic and bureaucratic (e.g powers of attorney) or too informal and risky: “Oh love, when you go to the shops, could you buy these items for me? Here’s my card!”

On all these fronts the key issue is this. Our society needs the infrastructure, tools and capabilities that make it possible to operationalise a human rights approach to personal data at the level of daily, practical details. After 16 years’ hard labour, that infrastructure is now pretty much built in Scotland by Mydex CIC and DHI, with our Paper providing an introduction to what it means to the practical implementation of human rights.

Read the latest Mydex CIC Paper

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This guest blog has been written by Alan Mitchell, Chair, Mydex CIC

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