Patient and Public Involvement

As a Patient

Supporting Patient and Public Involvement

At the Aortic Dissection Charitable Trust, we are committed to ensuring that the voices of patients, families, and the public shape everything we do. We believe that involving those with lived experience strengthens research, improves outcomes, and drives meaningful change in how aortic dissection is understood and treated.

Why Join Our PPI?

By getting involved, you will have the opportunity to:

• Influence research priorities to ensure they reflect the real concerns of those affected by aortic dissection.
• Help shape funding decisions, ensuring that research focuses on the most urgent and meaningful areas.
• Collaborate with researchers, clinicians, and policymakers to improve patient care and improve diagnosis.
• Be part of a community that values lived experience and uses it to drive progress.

You don’t need any medical expertise, just a willingness to share your perspective and a passion for making a difference in aortic disease research.

Ways to Get Involved

As a member of our PPI, you may be asked to:

• Contribute to discussions about what research topics matter most to patients.
• Review and provide feedback on research funding applications.
• Take part in focus groups, surveys, or interviews to share your experiences.
• Work with researchers to design patient-friendly studies.
• Help communicate research findings to healthcare professionals, policymakers, and the wider community.

Your involvement can be as much or as little as you choose, and we will support you at every step.

As a Researcher

Enhancing Your Research Through PPI

We recognise the vital role that patients and their families play in shaping impactful and meaningful research. Involving people with lived experience not only ensures that research is addressing the right priorities but also strengthens study design, improves recruitment, and enhances real-world relevance.

We aim to support researchers in embedding Patient and Public Involvement at every stage of their work, making it easier to engage those affected by aortic dissection in a meaningful way. Evidence shows that research incorporating public involvement is of higher quality, has greater impact, and is more likely to secure funding.

How We Can Support Your Research

Our Research Advisory Group connects researchers with a nationwide network of over 800 patients and family members, ready to contribute in a variety of ways. We can help by:

• Leading on PPI coordination throughout your project.
• Acting as co-applicants on funding applications.
• Reviewing funding proposals and lay summaries to ensure accessibility.
• Supporting study advisory boards or steering groups.
• Developing and reviewing patient information sheets, leaflets, and research materials.
• Coordinating focus groups to provide patient perspectives.
• Helping with the dissemination of research findings to a wider audience.

We collaborate closely with researchers to tailor involvement opportunities to the needs of each study, ensuring that public engagement is effective and meaningful.