Behind the headlines: New Dementia Research Institute involves people with dementia and carers from the start

If you are anywhere near a radio or television today then it is likely you will hear about the new UK Dementia Research Institute which is being created to step up the fight against dementia.

The £250M Institute – a partnership between the Medical Research Council (MRC), Alzheimer’s Society and Alzheimer’s Research UK – will be led from UCL and bring together other centres from around the country to work more collaboratively. Leading Belgian neuroscientist Professor Bart De Strooper is to head up the Institute.

You might find this in-depth interview with Professor Strooper from the Independent of interest. http://www.independent.co.uk/life-style/health-and-families/health-news/dementia-alzheimers-controlled-hiv-research-institute-health-a7473256.html

Here’s the UCL announcement about the new body https://www.ucl.ac.uk/news/news-articles/1216/141216-dementia-research-institute

It is good to see that the Institute will continue the strong traditions of public involvement for which dementia has become known. People with dementia and carers were part of the process which appointed Professor Strooper.

As well as contributing significant funding to the science at the Institute (£50M each I believe), the aforementioned charities will also be taking on responsibility for developing, delivering and – very importantly – evaluating the public involvement programme which is to be an integral part of how the Institute runs. In that sense they really are bringing both brains (patient and carer insight) and braun (money) to the initiative. We really are fortunate in this country in having two leading medical research charities in this field who really have taken public involvement to heart over the years.

Given the nature of the Institute and its focus on basic science (more cause than cure), the public involvement that happens there will provide an enormous amount of learning for other fields in how such work can be done in a notoriously challenging (from a PPI perspective) part of the scientific process. Also in hot areas of public debate like the use of data. It will help us understand how best to involve right at the start of science exploration. It will complement the work of others in this area published earlier this year and which I wrote about on this blog.

All credit also to the Medical Research Centre (MRC) who I have been critical of in the past about their approach to public involvement. In this instance, I think it has endeavoured to get its partnership with the public right, right from the start.

Simon Denegri Sent from my Work iPhone
You can also find me at:
Twitter: @SDenegri
Blog: https://simondenegri.com/

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