EMBED-Care Patient and Public Involvement

Patient and Public Involvement 

The EMBED-Care Patient and Public Involvement – Study Reference Panel (PPI-SRP) is an active and engaged group of people, all with first hand experience of a range of dementias. We are fortunate to be supported by this group who include individuals living with dementia and family carers who are caring or have cared for a relative with dementia. 

The EMBED-Care team work with the Study Reference Panel to ensure that the programme is informed by their experiences and remains relevant to all those affected by dementia. There are at least two formal meetings each year with on-going opportunities for the group to provide their perspective from more standard activities such as reviewing information sheets and consent forms through to supporting the development of our PhD students and later in the programme being involved in aspects of our public and policy engagement.

The Chair of the Study Reference Panel is a member of the EMBED-Care’s governance groups. This intends to ensure cohesion across the programme and an active patient and public involvement voice across all levels of the programme. 

At different stages of EMBED-Care we will also widen our patient and public involvement by sharing our work and seeking feedback from members of the DEEP groups (Dementia Engagement and Empowerment Project) across the UK covering urban and rural areas. We will also engage with National CJD and Young Onset Dementia support groups. This will help ensure the relevance of our work as the programme progresses.

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Older couple sitting in bench

Examples of involvement from the EMBED-Care PPI-SRP .... 

  • Reviewing participant information sheets and consent forms
  • Sharing experiences with EMBED-Care's PhD students
  • Refining data collection methods, for example, IPOS Dem 
  • Trial data collection methods, for example, data collection over the phone 

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PPI input in EMBED-Care PhDs

EMBED-Care’s five PhD students have benefited from the experiences and insights of our PPI group. Throughout the course of their PhDs our students regularly present their work to the PPI group. This provides an opportunity to present to a PPI audience and identify aspects of their research, where they can draw on the lived experiences of people living with dementia and current and former carers to inform. This helps to shape their thinking and the next steps in their research. Additionally, PhD students also meet with individual members of the PPI group for more detailed conversations, where the focus of study and lived experience have a strong connection, for example, Young Onset Dementia.