What CLAHRC is doing for PPI
CLAHRC EoE has a strategy which describes the overall vision for how CLAHRC supports PPI and finds out how Patient and Public Involvement (PPI) in research can be successfully carried out. This strategy can be seen by clicking here: PPI Strategy 2016 Broadly speaking, the work CLAHRC does in PPI can be categorised as ‘Operational PPI’ and ‘PPI Research’. Please see below for more information about these two areas.
By operational PPI, we mean ways in which PPI is carried out in the planning and organisation of CLAHRC EoE. It also refers to ways in which CLAHRC supports researchers, patients and the public in carrying out PPI activities, for example by providing training and guidance. For more information on the governance of CLAHRC, please click here
CLAHRC PPI Progress Reports
Every year, each of the 13 CLAHRCs provide a progress report for the NIHR. Updates on patient and public involvement and engagement (PPIE) are included in these reports, givings a brief summary of progress to date in implementing PPIE strategies. NIHR have extracted and compiled the PPIE sections of annual reports for 2014/15 and 2015/16 and made them publicly available. This is to support and promote the sharing of knowledge, learning and good practice across the NIHR and beyond. You can find the reports for every CLAHRC (including EoE) here:
CLAHRC EoE has six priority work streams known as ‘research themes’, and one of these is dedicated to Patient and Public Involvement (PPI) Research. The PPI Research theme works to understand how involving patients and public helps research.
What PPI research are we doing?
In order to look at how patient and public involvement helps research, the PPI Research Theme carries it out its own research. The current research projects in the Theme are (please click on the title to see the project summary):
- Implementing PPI in an NHS Research Programme (IMPRESS)
- Patients as partners to improve long-term conditions (PIPPIN)
- Residents Research Active in Care Homes (RReACH): How can people living in care homes be involved in shaping research?
- Impact of Patient and Public Involvement (PPI): Completing the feedback cycle
- Supporting LGBTQ Young People In Care: co-devising research-led training materials for multi-professional practice
To read about the people in the PPI Research theme, please click here
PPI work in CLAHRC EoE projects
All CLAHRC EoE projects must have patients and public involved in their research in a meaningful way. All CLAHRC EoE projects must include a PPI plan in the project proposal when they apply for CLAHRC funding, and ensure a minimum of 5% of the budget is for PPI activity. Members of the PPI theme help to review these plans and give any necessary feedback on improving the plans and how to carry them out.
An example of PPI in a CLAHRC funded project is the involvement of young people in the ‘Transfer of Care at 17’ study, led by Val Dunn (Research Associate in the Enduring Disabilities and/or Disadvantage Theme). This study looked at the challenges facing vulnerable young adults and the support they needed when going through changes in their care at ages 16 to 18. The participants were interviewed on two occasions about their mental and physical well-being and access to support, to identify any problems. Findings showed that young people needed greater support in their understanding and treating their poor mental health, which had an impact on them as they entered adulthood. These findings led to the development of 3 animated films showing the experiences and needs of young people in care, from the perspectives of young people themselves. Service users were involved in designing and creating the animations throughout the process, making sure that the films showed how they felt and what they needed. The films are being used all over the UK for training by the British Association of Adoption and Fostering (BAAF), as well as local authorities, fostering agencies, colleges and universities.
You can read more about this successful PPI work in Val Dunn’s blog about the study by clicking here