ALZHEIMER EUROPE
Patient and Public Involvement in research In early 2020, an article entitled “Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia” was published in the journal Dementia. Alzheimer Europe spoke to three of the co-authors – Chris Roberts, Helen RochfordBrennan and Jayne Goodrick – about the article and about their own experiences of PPI. Since 2012, when the European Working Group of People with Dementia (EWGPWD) was set up, Alzheimer Europe has increasingly involved people affected by dementia in Patient and Public Involvement (PPI) activities, in particular in the context of large European research projects. In 2017, and in collaboration with the pan-European network of researchers, INTERDEM, Alzheimer Europe and its EWGPWD developed a position paper on PPI in dementia research. The position paper was approved by the Boards of Alzheimer Europe and INTERDEM and published in an academic Journal (Aging and Mental Health) so that other organisations could use or adapt it. The 2017 position paper highlighted seven key areas
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It is very important for experts by experience to be involved in all relevant research and that they are given what is their right: a say in what and how research is undertaken. Our inclusion in PPI provides a unique and valuable perspective of the lived experience.” Chris Roberts
which form a framework for the development, which tend to receive less attention in the litimplementation and monitoring of PPI work erature. Based on their own preferences and in the context of dementia research. interests, each person affected by dementia decided to review one of them. In the article: As a follow up, in early 2020, a new article entitled “Our reflections of Patient and Pub- y Chris Roberts presents his experience lic Involvement in research as members of and views on the issue “Recognition and the European Working Group of People with acknowledgement of the contribution Dementia” was published in an international made by people with dementia” peer-reviewed journal (Dementia). The arti- y Helen Rochford-Brennan presents her cle was co-authored by Chris Roberts, Helen experience and views on the issue “ProRochford-Brennan (both living with demenmoting and protecting the rights and tia and members of the EWGPWD), Jayne well-being of people with dementia” Goodrick (supporter, Chris’s wife) and Dianne y Jayne Goodrick presents her experience and Gove, Ana Diaz and Jean Georges (Alzheimer views on the issue “Training and support” Europe staff). To write the article, all the co-authors worked together and identified The article was selected by the website comthree of the seven areas of the framework mittee of INTERDEM as the January ‘article of the month’, due to its relevance for researchers working in dementia.
Chris Roberts, first author What did it mean to you to be first author of this peer-reviewed journal article and how important was it, for you, to write such an article, recognising and acknowledging the contribution made by people with dementia, in the area of PPI?
Helen Rochford-Brennan (L), Chris Roberts and Jayne Goodrick (R) attending Alzheimer Europe lunch debate, 10 December 2019
It was and always is a great pleasure and experience to work with Alzheimer Europe as a member of the European Working Group of People with Dementia (EWGPWD) and it was a real honour to be asked to be the lead author on this journal article. Usually we, as people living with dementia, are asked for advice, feedback and comments for articles but hardly ever are we asked to Dementia in Europe 9
