My Brain Book
A Case Study on Responsible Research and Innovation in Information and Communication Technology for Ageing People.
This case study provides an example of industry working closely with both the public sector and the people it aims to assist. It also shows how industry can lead the way in listening to a group of people who often have no voice in wider society: people with dementia. The case study describes the ways in which people with dementia and their carers have been involved in a number of different and creative ways in the initial development and testing of a working prototype of a computer-based planning tool for people with the initial development and testing of a working prototype of a computer-based planning tool for people with dementia and their carers. The tool, called My Brain Book, aims to record information about the person with dementia in order to produce a care plan that is created jointly between the person with dementia and their families, and shared easily with a range of professionals. Engagement activities included: a parallel priority setting event, focus groups, involvement in design workshops and testing of the prototype. The involvement of people with dementia has directly influenced the development of the product and also changed the way ICT researchers and professionals see people with dementia. People with dementia convinced the designers that more emphasis should be given to elements of the system which enable families and professionals to really get to know the person with dementia before any care planning process begins. The design process and timelines were also influenced by people with dementia in order to ensure that they could be involved in meaningful ways. There are still many lessons to be learnt about the best ways for a responsible health and care industry to engage with people. This case study shows that with the right combination of support, customer engagement is possible and does lead to better products.