Patient and public involvement

Public and patient involvement workstream lead: Lorna Robertson, Operations Manager Bristol, Gloucestershire and South Gloucestershire, Alzheimer's Society.

The Dementia HIT aims to involve people affected by dementia in all aspects of its work. The views of people affected by dementia should guide decision making and help set priorities for the work of the HIT. The HIT's partner organisations are encouraged to follow the Dementia HIT patient and public involvement (PPI) guidelines.

Julie Clayton and Jan Connett are the HIT's Patient and Public Involvement (PPI) Facilitators, and can answer general PPI queries and provide advice. Professionals requiring PPI support (eg setting up a focus group) can complete the Dementia HIT PPI request form.

After receiving the form, Julie and Jan will work with the applicant to create the most effective involvement opportunity for their needs. A fee may be charged for support, which will be agreed in advance. A minimum of six weeks' notice is required for all PPI support requests.

The Dementia HIT PPI resource list includes guides and reports, useful for the planning, development and evaluation of PPI activities with people affected by dementia.

The BEST team carried out a literature review to help identify the best ways to involve people affected by dementia in research and service evaluation on behalf of the Dementia HIT.

Join our volunteer panel

One way to become involved with the Dementia HIT is to join the volunteer panel. Members of the panel are contacted about suitable involvement activities such as:

  • Taking part in a discussion group about a particular service
  • Commenting on paperwork and forms to make them more user-friendly
  • Providing ideas for future research or priorities for service improvement

However, members of the panel do not have to take part in any of the activities they are offered.

If you are a person living with dementia, someone caring for a person with dementia or an interested member of the public, and would like more information about joining the volunteer panel see the information sheet and sign-up form.

If you have any questions about the volunteer panel please do get in touch:

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