PPI opportunities in the research pathway

Identification and prioritisation

What they can do (focus and benefits of PPI): 

• Identify research topics and raise the need for new research
• Collaborate with researchers to identify topics for research
• Inform research priorities through lived experience
• Ask key questions about the need for and benefits to patients  

How they can do it (examples of roles and tasks):

• Discussions with existing reference groups and networks
• Holding a workshop or event for brainstorming
• Attending meetings held by service user groups
• Peer group interviews
• Surveys and interviews
• Asking support organisations about the feedback they get from people who use services
• Using an independent facilitator minimizes the effect of a researcher on the agenda

Useful references and top tips:

• James Lind Alliance – The James Lind Alliance (JLA) | James Lind Alliance (nihr.ac.uk) priority setting partnerships produce lists of research priorities decided together by people with lived experience, their carers and health professionals.
• Dr Joanna Crocker has developed a 'priorities for health and care research' tool based on the JLA priority setting partnerships - using this can help ensure your research addresses topics of known importance across a range of health conditions.
• The NIHR Research Design Service (RDS) provides design and methodological support to researchers applying for funding from NIHR and other national funding programmes. Help with planning and developing a PPI strategy for your grant application is available via RDS South Central which covers Oxford.  They have a small amount of funding for pre-submission PPI activities. Get PPI advice submit a request for support

Designing and managing research

What they can do (focus and benefits of PPI):

• Support the application to demonstrate the topic is relevant and important to patients
• Review research methods for ethical concerns and practical considerations
• Identify opportunities for PPI and suggest ways to increase the diversity of public views
• Inform the design of the research study such as helping to define outcome measures that are important to patients
• Ensure the lay summary is accessible
• Raise awareness about costs of PPI for the public
• Comment on the accessibility of project documentation

How they can do it (examples of roles and tasks):

• Be a named PPI contributor
• Become a co-applicant
• Take the role of PPI Lead
• Review the lay summary
• Be part of a PPI advisory group for the study
• Review and comment on proposed questionnaires and data collection methods
• Translate and interpret participant-facing documents (information sheets, consent forms and lay summaries) to ensure accessibility to a non-academic audience

Useful references and top tips:

• Help with designing your research
  
• Specific advice for involvement in clinical trials  (PDF LINK) 
• Good practice guidelines on the recruitment and involvement of public members on Trial Steering Committees (TSCs) / Study Steering Committees (SSCs)

Carry out the research study  

What they can do (focus and benefits of PPI):

• Assist in creating a recruitment strategy e.g., cost implications, time, confidentiality
• Ensure information for participants is acceptable and appropriate
• Identify potential participants and sites
• Bring skills and experience to support researchers in their data collection
• Be part of the PPI reporting cycle to funders and participants and other PPI contributors
• Support the research team in developing themes from data from a different perspective
• Help check the validity of the conclusions from a public perspective
• Develop progress reports or newsletters to keep people informed throughout the project
• Highlight findings that are more relevant to the public  

How they can do it (examples of roles and tasks):

• Membership of project team
• Being part of the project governance e.g., membership of a Steering Committee and attending team meetings
• Be members of a patient advisory group
• Produce public facing summaries as feedback for participants
• Act as co-researchers
• Train other co-researchers
• Co-lead focus groups

Useful references and top tips:

• Members of the public can also assist with library-based research and interpreting literature from a public perspective. This may be very useful for systematic review projects – Find out more about public involvement in systematic reviews

Dissemination of research findings and outcomes

What they can do (focus and benefits of PPI):

• Bring a wider perspective to the communication strategy
• Identify new and additional ways to reach the stakeholders and audiences

How they can do it (examples of roles and tasks):

• Co-author blogs, vlogs and journals about the study on the public involvement
• Jointly author and present the findings with researchers, participants and stakeholders such as patients, support groups and service providers
• Distribute results within their networks and forums 

Useful references and top tips:

• Remember to include funding for PPI to advise about disseminating the findings in your grant application
• Consider if you will need to allocate funding for developing and printing summaries and for postage
• Acknowledge your PPI contributors (using their names if they have given permission) in any publications
• Discussing your results with other patients can be a useful way to engage other members of the public for future involvement

Implementation – research into practice  

What they can do (focus and benefits of PPI):

• Increase the likelihood that results of research are implemented by adding validity to the findings
• Consider the practical implementation of sharing findings – e.g., geographical locations, care pathways, commissioning cycles

How they can do it (examples of roles and tasks):

• Develop patient information for new services/ interventions within hospitals, GP surgeries
• Help to develop training manuals for health professionals and/or other patients. Help to influence key agencies and policy makers

Useful references and top tips:

• PPI contributors can be great advocates for making changes happen

Evaluate and reflect on the research project

What they can do (focus and benefits of PPI):

• Collaborate with researchers to evaluate the research process
• Reflect on their role and what has been learnt and can be taken forward for additional projects

How they can do it (examples of roles and tasks):

• Publish the outcomes from your PPI, especially for more creative methods

Useful references and top tips:

• One way to make others aware of the impact from your public involvement is to contact the NIHR Centre for Engagement and Dissemination to put an article in an NIHR newsletter: ced@nihr.ac.uk

Recording impact

There are tools to assist in recording the impact of PPI.

Public Involvement Impact Assessment Framework (2014) has been produced to help researchers assess the impacts of involving members of the public in their research in diverse fields from health care to local history.

Guidance for Reporting Involvement of Patients and Public – The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting.