Creating a culture of patient and public involvement at the UK DRI

In December 2016, we announced Professor Bart De Strooper will lead the UK Dementia Research Institute (DRI). 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.

It was an honour for me to be asked to chair the lay interview panel for recruitment of the UK 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 UK DRI’s founding partner charities are bringing their expertise in patient and public involvement to the UK 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 UK 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.