PPIE for staff and researchers

• How will you incorporate PPIE members as equals in the research team?  
  • Example: terms of reference, establishing expectations, discussion of roles (PPIE members and research staff) 
• How will you continuously collaborate with public members ensuring they are up to date and can feedback throughout the research process?  
  • Example: regular meetings, updates, check-in points 
• What skills are required and/or can be learned by public members within the research project?  
  • Example: Skill development, personal and professional development, identifying and recognising contributions from public members 
• Are there resources you can provide for public members to enhance their involvement and contribution to the research team?  
  • Example: glossary of terms, pre-conversations about how meetings will be run 
• Have you been clear, upfront and open about the capacity of the involvement? 
  • Example: Reimbursement rates, number of hours required, timeline of project, writing role descriptions 

Identifying the topic

How will you involve the public in identifying the topic, and development of the grant application?

Examples: 

• Public members involved in discussions of relevance of healthcare topic; 
• Public member co-applicant involved in grant application writing; 
• Support in applying for realistic PPIE costs and expenses.

Designing the research method

How will you involve the public in designing the research method?

Examples: 

• Public representatives at research ethics panels; 
• Writing Patient Information Sheets (PIS); 
• Writing Consent Forms; 
• Writing Lay Summary; 
• Publicity; 
• Diverse participant recruitment. 

What training can you provide to ensure the research team are knowledgeable about what PPIE is and its importance in research?  

• Example: Workshops on inclusive PPI, reading materials, successful case studies, reverse mentoring, training and support 

What training can you provide for public members to support their skill development and the research project?  

• Example: research methods, data analysis, workshops, lay summaries, public speaking 

Is there a staff member who can be a key contact person for any questions or support needed by public members? 

• Have you considered how you will involve diverse public members in your research in a way that reflects the population effected by your health care area in an equitable and inclusive way?  
• Have you considered collaborating/recruiting from community groups?  
• Have you considered reasonable adjustments and accessibility for public members such as the need for a carer or translator?  
• Have you considered a realistic budget for PPIE member involvement including reimbursing for time and travel, potential carer costs, as well as other PPIE activities or events throughout the project? 
• Have you considered flexible working such as holding meetings outside of 9am-5pm, providing various forms of reimbursement (BACS or vouchers) or holding meetings in accessible community settings outside the university or hospital. 

How will you involve the public in carrying out the study?  

Examples: 

• Public representatives on a committee; 
• regular Patient Advisory Group (PAG) meetings; 
• Involvement in data collection such as interviewing participants. 

How will you involve the public in the data analysis? 

Examples: 

• Reviewing data with public members; 
• Involvement in qualitative data analysis (developing themes); 
• Identifying key recommendations. 

Have you considered creative ways to involve the public in your research?  

• Example: storytelling, artwork, infographics, videos 

Have you planned any events or resources which will be able to share the results and outcomes of your research with the public?  

• Example: webinars, workshops, newsletters 

Have you considered how you will monitor PPIE activities and record PPIE impact?  

• Example: evaluation, feedback, impact stories 

How will you involve the public in the disseminating research findings? 

Examples  

• Public members co-presenting at conferences; 
• Co-writing publications and blogs; 
• Involvement in creative engagement events such as science days or exhibitions;
• Raising awareness; 
• Share findings to a wider audience. 

It is encouraged to go out into the local communities to recruit PPIE members into your research. This will ensure a higher change of recruiting PPIE members that are representative of the local population. Patients can also be recruited through hospitals and other care groups.​ 

Also consider the type of experience (ex. Patient or carer) or health condition that would be most beneficial to your study. Involving the relevant public members in your research is important to avoid tokenism and ensure that their contributions are effective in maximising the patient benefit from the research.​ 

The following publication is recommended to explore this topic further:​ 

Staley, K., Elliott, J., Stewart, D. et al. Who should I involve in my research and why? Patients, carers or the public?. Res Involv Engagem 7, 41 (2021).  

PPIE involvement should include activities such as ideas, feedback, and suggestions. Researchers may take notes to record the information shared in discussions. This information would not be stored as data or analysed but will inform the direction of the research. ​ 

If you are systematically collecting information provided by public members for the purpose of answering a research question, then this is considered research data which would require ethical approval. The people providing this information would therefore be considered research participants rather than PPIE members.​ 

For more information, the following resource is recommended: Qualitative research and patient and public involvement in health and social care research: What are the key differences?

Further information may also be found on your organisation's intranets. 

When writing documents such as lay summaries, patient information sheets and role descriptions for PPIE members, the writing should be simple enough that you do not need a degree to understand the work. Consider providing the background for the research, using images, explaining any abbreviations and using short simple sentences.​ 

Yes. There are ongoing options through NIHR resources as well as opportunities to look out for within the King's College London infrastructure such as faculty seedcorn funding or through the King’s Engaged Research Network (KERN).​ 

In accordance with NIHR guidance, we strongly recommend reimbursing members of the public involved in your research. Reimbursement is provided to show appreciation for their time and the effort that is put in to help progress research in an effective way.  

Communication and working dynamics: ​ 

Ensure clear communication about roles, working environment, terminology, etc. Not all members of the public are familiar with the research setting and therefore discussions are useful to make sure that everyone on the team is on the same page. ​ 

This is also important when it comes to understanding values, attitudes and skills. Understanding the strengths of members in the team (researchers and the public) can help understand how everyone fits in. This can increase confidence of some members while ensuring that others do not become over-professionalised and lose their lay perspective.​ 

Training & Support: ​ 

Ongoing training and support may be needed for public members to be involved in research in an effective way. Plan this into your research plans to ensure resources and time are available. You may also want to consider their own professional and personal development interests.