Horizon Blog

MeMa 2.0 and Consent: Who will look after your Memory Machine?

MeMa 2.0 follows ‘The Memory Machine’ – a feasibility study funded by Horizon’ Services Campaign.

What is MeMa?

MeMa aims to contextualise personal memories into timelines to create a range of outcomes including:

  • personalised digital souvenirs,
  • digital repositories for the end-of-life,
  • engaging tools for personal reflection,
  • history education,
  • tools for accessing cultural heritage, and
  • interventions for dementia care to enable reminiscence
  • to improve the mental abilities and memory of people with mild to moderate dementia.


MeMa 2.0 and ‘Consent’

MeMa 2.0 involves work on the MeMa product design for the older adults with dementia who may lose their capacity to give consent at one point. The research team is designing a system that is sensitive to that change in capacity and provide users with options regarding how information can be controlled or shared with friends, but restricting access of intimate memories to nearest and dearest. MeMa prioritises accessibility and providing options to change consent choices, preferences about what happens to users’ MeMa and who they want to act on their behalf if they lose capacity.

MeMa 2.0 involves a participatory design approach, to reflect needs of older adults with dementia. In the workshops, the research team aim to capture participants’ ideas, discussions, and suggestions for integrating their preferences into design. One of the aims is to identify participants’ preferences on how they might want to handle MeMa after they lose capacity or at the end-of-life, and to incorporate these considerations into the design of the MeMa.

Can someone else give consent on your behalf?

The MeMa 2.0 team is building a dementia-friendly consent design system. It is one in which people are openly communicated with about different options available and empowered to exercise their rights in accordance with the Data Protection Act (DPA) 2018 and the Mental Capacity Act 2005.

The DPA 2018 does not prevent a third party acting on behalf of a person to indicate their consent. However, there is a need to show that the third party has the authority to do so (e.g, Power of Attorney). There are many challenges around obtaining ‘consent’ from a person with mild to moderate dementia and many uncertainties regarding what happens to their personal data after the end-of-life or once they lose capacity. In this work, MeMa 2.0 team will address difficult topics such as the right to be forgotten and withdrawal of consent.

Elvira Perez, Principle Investigator on the project states “We are building a Memory Machine with a clear aim, being able to provide an example of good practice for new technologies for what it means informed consent around difficult topics”.

To this date, many data protection related issues (e.g., consent and the right to be forgotten) associated with use of technologies for people with dementia remain controversial. Accordingly, many challenges exist in integrating consent rules into design. How do we design a system that is sensitive to the change that occurs in a person’ capacity? How do we build a system that is easy for users to say a particular person can act on his/her behalf? MeMa brings the opportunity to think about these questions and integrate the answers into the design of a new piece of technology. MeMa 2.0 aims to inspire dementia-friendly design processes of new technologies and address controversial topics about what happens to personal data after the end-of-life.

Written by:  Ayça Atabey



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