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What is PPIE?

Patient and public involvement and engagement (PPIE) refers to the active engagement and collaboration of patients, individuals from the public, and/or their representatives in the planning, conduct, and dissemination of health and social care research. The goal of patient and public involvement is to ensure that research is relevant, meaningful, and reflects the needs and perspectives of those who will be directly affected by its outcomes.

Patient and public involvement is seen as a valuable and ethical practice in research, recognizing the expertise that individuals with lived experience bring. It enhances the quality and relevance of research, increases transparency, and helps build trust between researchers and the communities they serve.

PPIE and lived experience are central to all that TBI-reporter does, and we are committed to ensuring that all research that is collected and shared on the portal will include meaningful patient involvement aligned with the UK standards for PPI. The very broad range of research and populations impacted by traumatic Brain injury means that TBI-REPORTER’s outputs will affect large and disparate populations

Our PPIE panel will coordinate the review of all TBI-REPORTER submissions, advise on the platform development and its use and support the executive committee to deliver meaningful and impactful results. Their involvement will:

·        influence the kinds of data collected from research groups

·       help prioritise research areas of value to patients

·        ensure the operation of the platform and sharing of resources is ethical and informed by lived experience

·       support efficient dissemination of the platform’s impact to patients and the general public

The panel will also advise on the development and delivery of Public Engagement activity bringing the work of TBI-REPORTER to diverse stakeholders.

What we expect

The PPI reviewers will expect to see that your project has taken account of the views and experience of those affected by TBI. Think about how you can involve patients and carers to demonstrate that you have:

  • Thought about the relevance and need of your research
  • Considered how you will recruit participants to your study and ensure these are representative of the populations affected
  • A plan for dissemination of your results to increase their impact
  • Consideration of need for PPIE from traditionally underrepresented groups (IPV, prisoners, homeless, children, older people)

Researcher submitting research for inclusion in the hub are asked to outline their PPI using the TBI-REPORTER Proposal Enquiry form

Payment for PPI

It is important to ensure your research budget makes allowance for the costs of PPI. This may include: marketing, reimbursement for travel to meetings, printing, facilitation of meetings and other sundries. The public members should also be paid for the time they give to the project.

The NIHR sets out the following rates, which can be used as a guide/ benchmark:

  • £12.50
    For involvement in a task or activity such as reading and commenting on an abstract which equates to less than half an hour. For example, reviewing papers for the development of Alerts.
  • £25
    For involvement in a task or activity requiring little or no preparation and which equates to approximately one hour of activity or less. For example, participating in a focus group to provide feedback on a proposal.
  • £50
    For involvement in a task or activity likely to require some preparation and which equates to approximately two hours of activity. For example, a teleconference with related papers to read or review a few short documents.
  • £75
    For involvement in a task or activity where preparation is required and which equates to approximately half a day’s activity. For example, participating in a meeting to interview a small number of candidates who have applied to join a committee or panel, participating in a focus group, or delivering training.
  • £150
    For involvement in all-day meetings. For example, attending a committee or panel meeting as an observer prior to becoming an active public member of a committee/panel.
  • £300
    For involvement in all-day meetings that require substantial preparation. For example, when chairing or co-chairing a meeting or when carrying out other discretionary work, which requires additional responsibilities.

 There are extensive resources and notes on payment here

The Research support service can offer advice at pre-application stage and may award funding to help with costs of early PPI.

Tips for good PPI
Start Early and Plan Effectively:
  • Begin involving patients and the public at the early stages of your research project, including the planning phase.
  • Develop a clear plan for how you will involve patients and the public throughout the entire research process.
Build Relationships and Partnerships:
  • Establish strong, meaningful relationships with patient and public representatives.
  • Develop partnerships based on mutual trust, respect, and shared decision-making.
Understand the Diversity of Patient and Public Perspectives:
  • Recognize that patients and the public are not a homogeneous group; they have diverse backgrounds, experiences, and perspectives.
  • Be inclusive and strive to involve a representative sample of the groups impacted by you work.
Provide Training and Support:
  • Offer training to patients and the public involved in the research process, helping them understand their roles and the research context.
  • Provide ongoing support and ensure that individuals feel comfortable and confident in their contributions.
Clear Communication:
  • Use plain language in all communications to ensure that information is accessible to everyone.
  • Provide regular updates on the progress of the research and the impact of patient and public involvement.
Respect and Value Contributions:
  • Acknowledge and value the unique contributions of patients and the public.
  • Ensure that their input is genuinely integrated into decision-making processes.
Flexible and Adaptable Approach:
  • Be flexible in your approach, recognizing that different individuals may have varying levels of involvement and comfort with certain tasks.
  • Adapt your methods based on feedback and changing circumstances.
Ethical Considerations:
  • Respect the ethical principles associated with involving patients and the public in research.
  • Ensure confidentiality and informed consent and be transparent about the purpose and impact of the research.
Feedback and Evaluation:
  • Seek regular feedback from patients and the public on their experience of involvement.
  • Evaluate the impact of their contributions on the research process and outcomes.
Disseminate Findings:
  • Share the results of the research with the patients and the public who were involved.
  • Communicate findings in a way that is accessible and meaningful to a non-specialist audience.
Learn and Improve:
  1. Continuously learn from the experiences of patient and public involvement.
  2. Use feedback to make improvements in future research projects.