Patient and Public Involvement, Engagement and Participation (PPIE/P)

The aim of the PPIE/P strategy is to improve the quality and impact of research conducted by the BRC and CRF. To achieve this, we have the following objectives across the BRC and CRF. We will: 

1. Make sure that patients and public are involved in planning, designing, running, and broadcasting research projects.
   
   
2. Develop a rolling programme of projects and activities that align with the overall aims and objectives. Be responsive to the changing needs and priorities of patients and the public.
   
   
3. Build capacity including training and support for researchers and members of the public who are involved.
   
   
4. Evaluate impact and effectiveness Then use this information to improve and develop this strategy. 

The strategy contains several key parts:

1. We will raise awareness among patients, the public and healthcare professionals about the value and benefits of public involvement. These educational projects will address misconceptions or barriers associated with research and encourage participation in studies.
   
   
2. We will build strong partnerships with community groups and organisations, and other stakeholders to make sure that patients’ and public views are at the centre of our research agenda, policy development, and decision-making processes.
   
   
3. We will create a culture that encourages co-creation and collaboration with patients and members of the public. Patients and the public will actively participate in the design, running, and evaluation of research projects and services.
   
   
4. We will monitor and assess the impact of public involvement, measure outcomes, and identify areas for improvement. Based on results, we will continuously refine our processes and practices, keeping patient and public input at the centre of our decision-making.

• Our PPIEP Group developed TrialsConnect and Patient Powerhouse UK harnessing the power of patient-stories and supporting research by ‘patients helping patients’ to engage with research inspiring things we could not have done ourselves.
• PPIEP initiatives have contributed to 30% of participants in our studies being from non-white ethnic groups.
• Our patients are co-applicants on grants/actively involved in research planning.
• During the COVID-19 pandemic, TrialsConnect developed engagement materials for COVID studies (adopted nationally by NIHR) and a card for patients who may be hospitalised to carry indicating their wish to participate in research helping relatives if they should be too unwell to consent.
• ‘Patients-to-Industry’ sharing their trial experience: PAREXEL/Novartis UK & Global, and IQVIA-UK, have heard our patient stories and factored these into future trial design.
• “Whose trial is it anyway?” Training for Aspiring Research Scientists/Medical Students. Sharing the value of PPIEP, patients relay trial-experience, take part in ‘history-taking’ and enthuse/help train the next generation of researchers.
• The Annual Barts and Queen Mary Science Festival: run by our PPIE/P group since 2008; 400+ 11- to 14-year-olds BRC science/meet patients.