Patients are central to our work of the NIHR Imperial BRC, supporting our aims to transform health outcomes locally and internationally through translational research. We are committed to actively involving and engaging patients and the public as partners in the processes by which research is identified, prioritised, designed, conducted, and disseminated. As such, our Patient and Public Involvement (PPI) & Public Engagement (PE) Strategy covers four main areas in which we are working to engage patients and the public.
Build capacity and expertise
By building capacity and expertise in PPI and PE, we can ensure that the patient and public ‘voice’ is heard across the BRC and throughout individual research Themes, and that the benefits of true involvement and engagement are understood at all levels. Our patients and public research panel provides a high-level forum for interested and committed patients and members of the public to get involved on a regular and formal basis. In addition, we have established a core group of 10-20 patients and members of the public, and a wider forum, comprising patients with specific expertise or medical conditions, those willing to support research but with less time available, and representatives of charities or local communities. We also produce guidance for PPI and PE activities to support the standardisation of approaches across the BRC, including guidelines on definitions and methods, and policies and procedures on accessing, recruiting and rewarding patients and members of the public.
Assess the impact of PPI/PE
We have selected a small number of priority projects, such as the 100,000 Genomes initiative, to carry out detailed evaluation of PPI/PE activities in collaboration with partners. Through the Patient Experience Research Centre (PERC), we also develop research methods to drive up the quality and effectiveness of PPI/PE.
Establish mechanisms and standards for monitoring and reporting
Evaluation of our PPI/PE activities is essential, in order to learn from experience. We have developed a tailored PPI/PE educational and training programme for researchers, clinical academics, research managers and other staff, which can be delivered as part of individual programmes or as external events.
Pilot PPI Standards – In order to ensure clear reporting, monitoring, evaluation and learning we adopt a common approach to PPI/PE standards and categories, and develop resources and educational activities to support their implementation.
Share Good Practice – We hold regular meetings with Theme Leads and provide reports for the AHSC Research Committee, as well as workshops for PPI leads and champions within the BRC. We also use the Imperial College PPI Research Forum to bring together stakeholders from across NW London.
Collaborate with key players
We collaborate with stakeholders in the health economy and research community at organisational, local and national levels:
- We have created an Imperial BRC PPI/PE Virtual Network, comprising all those identified as PPI/PE representatives or champions within the individual BRC Themes, to facilitate communication, information flow, sharing of good examples, practices and innovation
- The Imperial College PPI Research Forum includes representatives from Imperial College Health Partners (ICHP), the North West London (NWL) CLAHRC,other BRCs in the area, our NIHR/Wellcome Clinical Research Facility, the Imperial Clinical Trials Unit (ICTU) and others
- The national BRC PPI working group within the BRC/BRU Managers’ Group works on common areas of interest and development. The Imperial Academic Health Science Centre (AHSC) and BRC take part in national campaigns, such as International Clinical Trials Day