Implementing PPI in an NHS Research Programme: Evaluating the PPI contribution to CLAHRC research implementation (IMPRESS)
Type of research:
Mixed methods qualitative action research
Background and Scientific Rationale:
Increasing and ever-wider public and policy support is now given to including public and patient involvement in the design and delivery of services and intervention research in health and social care. Involvement is supported by a growing body of evidence that PPI can enhance wider engagement in research, participant recruitment, retention, ethical coherence, intervention adherence and application of findings. Any research infrastructural programme may produce more effective research if it can provide systematic and appropriate support for PPI in its organization and components. Implementation theory such as Normalisation Process Theory (NPT) suggests that “normalizing” processes (such as PPI) within organisations and projects, especially when aiming to research complex health systems faced with complex health problems, will encounter difficulties of communication and “fit” with values and routine practices. To address such difficulties may require research which examines implementation objectives in project objectives and processes, and then monitors change (Grol, Berwick, and Wensing, 2008). Implementing PPI therefore requires identifying and monitoring project responsiveness to those participants’ abilities, priorities and practices, if participants are to be enabled to engage with research activities and communications. This in turn can help ensure researchers are able to design and implement more research processes and products which can be more responsive and relevant to participant concerns in different settings and for different groups including the harder-to-reach groups (Fixsen, Naoom et al 2005; Beresford, 2005). Best practice PPI has been evidenced to include identifying service users with appropriate skills and experience for projects, early and appropriate resourcing, training and support for participants to be involved in research activities, management or other project roles, education of researchers in positive approaches to PPI. Setting up a CLAHRC offers an opportunity to systematically implement support resources and process for PPI, and to do so by using an action research approach to understand what may be entailed in “normalising” PPI (using an NPT approach) and in turn, how different types of projects might condition PPI requirements with differing “normalisation” outcomes.
Research questions / aims:
- What may be entailed in “normalising” a programme of PPI across a CLAHRC?
- How might different types of projects condition PPI requirements and with what “normalisation” outcomes?
- Identify resource use within this PPI programme to provide PPI cost estimates.
Research Methods used:
Normalisation Process Theory (NPT)-informed multi-level approach was used to identify, evaluate and refine through 2 cycles of action research, a programme-level and project-level analysis of the implementation of PPI within the 5 year CLAHRC East of England programme of research projects. This project buits upon a current NIHR funded project (RAPPORT) that ran from the University of Hertfordshire (UoH) and the University of East Anglia (UEA).
The study team drew upon the NPT tools developed within RAPPORT and refined these further within an action research design thus adding to evidence base of methodological approaches to researching PPI.
Impact and added value:
Documenting the multi-level research study provides a unique resource in linking implementation theory with conceptualising PPI/service user involvement processes and dynamics and requirements in relation to different types of CLAHRC-related projects and their outputs. The use of comparative case studies provides rich contextual insights into the range of processes of supporting and managing PPI in research studies within a knowledge network. Besides peer-reviewed publications in high impact journals, these would also provide the basis of service user group – health and social care provider -, PGR- researcher- and policymaker- accessible materials. A project website would also be used to publicise the research and its documentation and outputs. This would build on related research and methods in PPI already carried out by the research team who have a strong collaborative record across the CLAHRC area and able to disseminate results nationally across a range of NHS and cross-sectoral groups.
Key findings and outputs:
IMPRESS found differing ways in how PPI happens in programme research; how PPI is implemented; and how research teams make sense of, gain commitment to, work together on and assess the success of PPI. This learning underpins an action plan agreed with stakeholders in the region and beyond, to robustly embed PPI. The agreed Action Plan shares current good PPI practice, and steps which strengthen PPI in research and practice.
The Action Plan recommendations:
- More training, education, advice and discussion around PPI
- More informal networking and cross-theme discussion on PPI sources and networks
- Support provided for PPI initiation before and maintenance between projects
- Plan PPI structures, purpose and roles in relation to project timelines
- Construct a CLAHRC EoE PPI resource handbook
- Greater transparency and sharing of project reports with PPI representatives
- CLAHRC to be flexibly responsive to changes in PPI plan within a project’s timescale
- Mobilise PPI for translating research into practice
- Timely and appropriate feedback given to PPI representatives
- Emphasise the evaluation of PPI within projects beyond existing use of KPI tool
Publication: Keenan J, Poland F, Boote J, Howe A, Wythe H, Varley A, Vicary P, Irvine L, Wellings A. ‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed by Normalisation Process Theory. PLoS One. 2019 May 14;14(5):e0215953. doi: 10.1371/journal.pone.0215953. (link)
Films about IMPRESS: Project Team Members have produced 3 shorts films about PPI on IMPRESS, the project itself and the key findings. These films can be found on our YouTube page:
BITE: For a ‘BITE’ sized summary of the research, please see: IMPRESS BITE May 2016
For further information on this project, contact Professor Fiona Poland at firstname.lastname@example.org