Getting Involved in the Dementia Themed Call:
How patients and carers can help in developing research ideas for the call
More general details of the NIHR call are on DeNDRoN page and the NIHR website; www.nihr.ac.uk/research/Pages/Dementia.aspx
Patient and public involvement is at the heart of the National Institute for Health Research (NIHR) Dementia Themed Call for applied health research on dementia in 2011. Lay people can help with developing the research ideas, and later in assessing and reviewing those proposals.
DeNDRoN’s particular focus for PPI in this dementia themed call is in the development stage - turning research ideas into realistic, good quality study proposals. These research ideas could be, for example, about how to help people to live as healthily as possible at home, in a care home or hospital, or researching ways to help people take their medications properly.
Opportunities For Patient And Public Involvement In This Process
There are various methods to engage with lay people, to help researchers develop their ideas for research into NHS clinical care for people with dementia. DeNDRoN will support a number of the research proposals by ‘Writing Groups’ which bring groups of research collaborators together – and formal lay representatives wherever pertinent – to work on writing multi-centre grant applications for the themed call.
Although the closing date for OUTLINE research applications was set as 20th May 2011, opportunities for PPI continue throughout 2011 in the process of writing the FULL applications.
Methods
Here are examples of some of the main involvement methods:
- Small discussion groups and one-off ‘focus group’ meetings. These may be held in various cities around the country throughout 2011.
- Surveys – either email or by post – about issues in a particular proposal for research. These can be done from home.
- In-depth interviews – these are often better face-to-face and can look at a research proposal in depth, maybe in someone’s own home.
Further background guidance
DeNDRoN has also been working with other organisations which may provide support with PPI in applications for the Dementia Themed Call, such as the Alzheimer’s Society and NIHR Research Design Services. Information about these is on the following link to the INVOLVE guidance which is aimed mainly at RESEARCHERS but contains much useful information: Patient and public involvement in the National Institute for Health Research (NIHR) Dementia themed call for research – INVOLVE guidance for researchers 
Patients, carers, members of the wider public and researchers cannot be directly involved in developing a research proposal AND formally reviewing that application for themed call funding decisions. The same is of course true for researchers. Guidance on avoiding “conflict of interest” follow this link: Dementia Themed Call: Considering Conflicts of Interest when working with the National Institute for Health Research (NIHR) programmes 
Contacting us. . .We need your input!
We need your input! Please see the information about various ways to contact us on the main DeNDRoN PPI page or submit your details using this form.
When contacting us about involvement in this Dementia Themed Call process, or more widely, please mention:
- Where in England you are (England is the focus of the Dementia Themed Call process)
- Your contact details
- Whether you are interested in all disease areas or only specific disease areas only
- Your degree of mobility, and any disabilities and hearing difficulties
- Whether you can use emails and have access to the internet
- (Note: We won’t keep any personal medical information on the database)
To discuss PPI in the NIHR Dementia Themed Call, or for any questions:
Please contact Terry McGrath, PPI Coordinator at the DeNDRoN Coordinating Centre (see contact details at bottom of this page) or email him on: terry.mcgrath@dendron.org.uk