Respect

Respect is the cornerstone of PPIE. It means acknowledging that people with TBI bring unique expertise that complements academic and clinical knowledge. Respect involves listening carefully, valuing input even when it challenges assumptions, and creating environments where every voice is heard without judgement.

Accessibility

Accessibility ensures that participation is possible and comfortable for all. This may involve adapting meeting times, simplifying written materials, or providing breaks during sessions. Accessibility also includes digital access, ensuring that online meetings and documents are usable with assistive technologies.

Co-creation

Co-creation moves beyond consultation. It means developing ideas, methods, and outputs together, with equal weight given to lived experience and research expertise. Co-creation allows contributors to influence priorities, guide study design, and shape how findings are communicated to the public.

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Roles for Public Contributors

Public contributors can take part in many different ways. These roles may vary depending on project needs, time commitments, and contributors’ own interests.

Advisory

Advisory roles include membership of steering groups, advisory boards, or project panels. Contributors provide guidance on relevance, feasibility, and participant experience. Their perspectives help prevent blind spots in research design and implementation.

Co-researchers

In co-research roles, public contributors take part in data collection, analysis, or interpretation. For example, they may help design interview questions, facilitate focus groups, or review findings to ensure interpretations align with lived experience.

Dissemination

Public contributors are essential in sharing research outcomes beyond academic circles. They may co-present findings at community meetings, contribute to plain-language reports, or co-author publications. Their involvement helps ensure research outputs are understandable, meaningful, and widely accessible.

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Inclusive Communication

Inclusive communication is fundamental to effective PPIE. People with TBI may experience fatigue, memory challenges, or difficulties processing complex information, making clarity essential.

Plain-language summaries

Every key document should be accompanied by a plain-language summary. These summaries avoid jargon, use short sentences, and explain acronyms. They should describe the purpose of the project, what is being asked of contributors, and expected outcomes.

Formats

Communication should not rely on a single format. Offering materials in print, digital, audio, or large-text versions can make participation easier. Meeting notes should be circulated promptly, and visual aids should be used carefully to support, not overwhelm, understanding.

Language considerations

Language matters. Words that imply deficit or limitation should be avoided in favor of respectful, person-first language. Checking terminology with contributors themselves is an important part of inclusive practice.

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Ethics & Safeguarding in PPIE

Ethics and safeguarding are not only about formal approval processes—they are also about daily practices that ensure safety, dignity, and trust.

Boundaries

Clear boundaries help everyone understand what participation involves. This includes clarifying roles, decision-making power, and the limits of involvement. Setting expectations reduces misunderstandings and protects contributors from over-commitment.

Consent in plain terms

Consent must be informed and meaningful. All consent processes should be explained in plain terms, with opportunities for questions. Written consent forms should be short, clear, and provided in accessible formats. Contributors should know they can withdraw at any time without consequence.

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Compensation & Recognition

Fair recognition of contributors’ time and expertise is essential to ethical PPIE. Compensation may take different forms, such as honoraria, vouchers, or other tokens of appreciation, but the principle is consistent: lived experience is valued expertise.

Recognition also extends beyond payment. This may include acknowledgment in publications, authorship where appropriate, or formal certificates of contribution. Recognition reinforces the message that lived experience is integral to research, not supplementary.

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Measuring Impact

Understanding the value of PPIE requires more than counting meetings. Impact should be measured in terms of how involvement changes research, improves relevance, and benefits contributors.

Qualitative feedback loops

Qualitative feedback is a practical method for capturing impact. Contributors should have regular opportunities to share reflections on their experiences, both positive and negative. Researchers should report back on how feedback has been acted upon, creating a loop of transparency and accountability.

Impact measurement may also include reflective logs by researchers, case examples of changes made due to contributor input, and tracking dissemination outcomes that reach wider communities.

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How to Get Involved

People with lived experience of TBI, carers, families, and community advocates are warmly invited to join PPIE activities. Involvement can range from occasional consultation to long-term co-research roles.

• Learn more about our approach on the About Us page.
  
• Explore our current Roadmap to see upcoming opportunities for involvement.
  
• Reach out directly via our Contact page to express interest or ask questions.
  

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Frequently Asked Questions

1. What does PPIE stand for?
PPIE means Public and Patient Involvement and Engagement, a way of working where people with lived experience contribute directly to research.

2. Do I need research training to be involved?
No. Your lived experience is the expertise we value most. Any training needed for specific tasks will be provided.

3. How much time do I need to commit?
This depends on the role. Some opportunities may involve a single meeting, while others may last several months.

4. Can family members or carers take part?
Yes. Carers and family members often bring vital insights into daily realities of TBI.

5. Will my contributions be anonymous?
This is your choice. Contributors may remain anonymous or be acknowledged, depending on their preference.

6. How will I know if my input makes a difference?
We commit to closing the feedback loop, showing contributors how their ideas influenced research decisions.

7. Is compensation always provided?
Compensation is offered whenever possible, in line with best practice. Details are shared at the start of each project.