Patient and Public Involvement (PPI)
There are different levels of Patient and Public Involvement (PPI) in the project. They include:
Carer Reference Panels
Each PPI co-applicant, Shirley Nurock and Dr Barbara Woodward-Carlton, chairs one of two Carer Reference Panels for the project, in London and Yorkshire respectively. These panels are composed of people who have or have had family members living in care homes.
The Carer Reference Panels provide an additional level of oversight of the project and provide advice. The next meeting is of the London Panel in December 2017.
We will be consulting about our study with five residents currently living in care homes.
International Advisory Group
A PPI representative has joined the International Advisory Group for the project, providing a strategic project overview level. The addition of PPI representation has greatly strengthened the work of this group, which is composed primarily of academics and management-level healthcare/care home staff.
Pilot Trial launch events
Members of the Carer Reference Panels have been invited to attend launch events in the care homes which are participating in our Pilot Trial. These will create an opportunity for Panel members to help with recruitment and to answer any questions about the Trial, particularly from the perspective of family involvement. Panel members have provided invaluable input to the information sheets and briefing notes that we will use at these events.
Carer Reference Panel members have been invited to assist with analysing interview data at a later stage of the Pilot Trial. We have held workshops at meetings in London (above) and Yorkshire where we presented an overview of qualitative data analysis and framework analysis, which is the approach being used in the BHiRCH project.
Above: Members of the Yorkshire Carer Reference Panel and research study team enjoying a meeting in March 2017
We are working with the Carer Reference Panels to evaluate the PPI involvement aspect of the BHiRCH study. We will draw on Panel members' prior experiences and perspectives of PPI involvement and initial experiences of getting involved in the BHiRCH study. We will complete two reviews across the life of the study: at the end of the Feasibility study and after the Pilot study. The evaluation will form part of the final report to NIHR (study funder).
Barbara Woodward-Carlton and Shirley Nurock have written a short article about the role of the Carer Reference Panels in the BHiRCH study and family carers acting as advisers in care home research (see below). This was published in Network News, the newsletter of the Alzheimer's Society's Research Network
Network News - Better Health in Residents in Care Homes (pdf, 748KB)
Last updated 17 November 2017