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Creating a culture of patient and public involvement

Today we announced Professor Bart De Strooper will lead the UK’s first Dementia Research Institute (DRI), a combined investment from the MRC, Alzheimer’s Society and Alzheimer’s Research UK. Sara Gregson from the Alzheimer’s Society Research Network, a former carer for her mother with dementia, chaired a recruitment panel involving people affected by dementia. Here she explains the importance of their involvement.

panel_alzheimers-societyIt was an honour for me to be asked to chair the lay interview panel for recruitment of the DRI director.

The panel involved people living with dementia and carers from the founding charity networks. We had the opportunity to hear from and speak to the potential candidates, all of whom had significant backgrounds and experience in dementia research.

The DRI marks a combined investment of £250m from the MRC, Alzheimer’s Society and Alzheimer’s Research UK that will transform the landscape of dementia research in the UK.

The founding partner charities are bringing their expertise in patient and public involvement to the DRI. This will ensure the voices and experiences of people affected by dementia shape its work throughout. Recruiting the director provided the first opportunity for meaningful involvement.

The panel

Six people with dementia, carers and former carers – including myself – were invited to form a panel to meet with the four shortlisted candidates. It was slightly daunting – but then that was why we were interviewing them. We wanted to see if they could tailor their language and ideas so that we, as lay people, could understand their vision and assess their suitability for the role.

Before we met the candidates, we discussed and agreed the questions we wanted to ask. As a group, we decided to focus on the following topics:

  • The candidates’ views on what should be the priority in dementia research
  • The use and sharing of patient data
  • How to encourage more diversity in research participation
  • The role of patient and public involvement in the DRI
  • The candidates’ approach to communication.

The interview

We requested for the candidates to be introduced to us using first names only so that no prior knowledge about the candidates would influence our discussions. Each candidate gave us a short presentation of their vision for the institute. We then asked our questions, which inspired four fascinating and very different conversations.

At the end of the day, I presented the panel’s feedback to the Directorship Advisory Panel. This included the highlights on each candidate including our preference to appoint Professor Bart De Strooper to the role.

Our choice

We selected Bart from a competitive pool of international candidates. He coped well with our wide-ranging, lay-centred questions, answering them in an engaging, clearly understandable way. He also demonstrated great depth of knowledge and experience of dementia research.

We are delighted he will be taking the lead at the DRI and that we played a small part in his appointment. People with dementia and their carers have so much to offer scientists and researchers, as they try to find the causes of, and cures for dementia.

We felt that we offered varied, unique and practical perspectives to the interview process and are delighted that the Advisory Panel agreed with our choice.

Sara Gregson

This article has been re-purposed from the original Alzheimer’s Society article.

Professor Bart De Strooper has set out his vision to build an institute of international repute with a central focus on the biological mechanisms underpinning dementia, coupled with a broad vision and strategy to support research in care, technology and public health.

He comes to the DRI from Leuven in Belgium where he is a clinician, researcher and Scientific Director of the Vlaams Instituut voor Biotechnologie. His work focuses on the mechanisms that cause cell death in Alzheimer’s and Parkinson’s disease and has made a major contribution to our understanding of the role of the protein gamma secretase in the production of amyloid plaques.


Also published on Medium.

2 Comments Post a comment
  1. Dr De Strooper researches only genes and disease mechanisms. He does no discovery research in nutrition or prevention, and without knowing the cause, one can never have prevention. His main focus is on finding drugs to treat dementia, but if we knew the cause, we could prevent the disease, and no drug would be needed. He also hopes to spend a very large amount of money in the UK on an off-target and dubious analysis of genetic changes in a wide variety of brain cells in Alzheimer’s–a project that leads nowhere.

    December 20, 2016
    • ibaker #

      Hi Robert,
      Please see a response below from Professor Bart De Strooper.
      All the best,
      Isabel, MRC Science Content Editor

      Whilst the DRI hopes to find new drug targets, prevention is also very much part of the mission. The vision is to establish a unique environment with a diverse and interdisciplinary team ready to undertake creative and innovative research. Just as we realised that a whole range of factors is responsible for how cancers occur and progress in an individual, we will now take a more holistic view of dementia and accept that a wide range of approaches – all the way from prevention to diagnosis to treatment and care – may be needed in order to be successful.
      Best regards,
      Professor Bart De Strooper

      January 5, 2017

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