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Chris Roberts and Jayne Goodrick talk about the importance of patient engagement

Monday 27 August 2018

Chris Roberts is the Vice-Chair of the European Working Group of People with Dementia (EWGPWD). The group participated in a consultation for the PARADIGM project on 27-28 June 2018 in Brussels. In a subsequent interview, Mr Roberts and his wife, Jayne Goodrick spoke about their experiences of being involved in this consultation and about patient engagement in general. Some of the interview is featured in a blog post on the PARADIGM website, and some will appear in Alzheimer Europe’s upcoming Dementia in Europe magazine (28th edition, October 2018). The PARADIGM blog post, posted on 27 August, consists of a four-question Q&A, opening with:

How do you feel about the idea of patient engagement in the process of developing medicines? Do you think this is relevant for people with dementia?

Chris:  Patient engagement and involvement is absolutely necessary, it can save money and time, give valuable insight and advice that you can only receive from someone living with the condition. I am living with my illness daily. I experience and feel things that can’t always be learnt by the professionals in my care or who sat around a committee table.  Also do not forget that some people with dementia may have been a doctor, a researcher or a professor before they got dementia. There is the misconception that after one gets a diagnosis of dementia you suddenly become stupid. We just need extra support, understanding and reasonable adjustments to be made, we need to be asked what we require to participate.

Jayne: If this is relevant to other disease areas, why wouldn’t it be relevant in the dementia area? Rather than asking is this relevant to you? Let’s look at why it would not be relevant for you, and that then goes on to other relevant criteria. The stage of dementia for example, may have an influence on that, but the diagnosis itself would not say whether or not that person is going to be able to take part. It is about supporting the person in any way that may be needed, making sure that the person feels confident about participating in these high-level medical discussions. And those on a more local level.

To read the full PARADIGM blog post, see: https://imi-paradigm.eu/patient-engagement-in-cognitive-impairment-extra-support-leads-to-informed-contributions/

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