The Difference You Can Make
As someone with lived experience of aortic dissection, whether as a patient, carer, or family member, you have a vital role to play in shaping research. Your insights can influence research priorities, improve study design, and ensure that findings lead to meaningful changes in diagnosis, treatment and care.
By getting involved, you can:
✔ Help researchers focus on the issues that matter most to patients.
✔ Improve how studies are designed and ensure they are accessible to those affected.
✔ Influence funding decisions and increase the impact of research.
✔ Support the translation of research into real-world improvements in care.
Ways to Get Involved
There are many ways to contribute, depending on your interests, experience, and availability. Here are some examples of how you can get involved in aortic dissection research:
- Suggesting New Research Topics
Patients and carers often highlight research gaps that scientists may not have considered. For example, a patient group might suggest studying the long-term psychological impact of aortic dissection or exploring ways to improve follow-up care after surgery. - Prioritising Research Questions
Your voice helps determine which research questions are most urgent. Patients have previously influenced research by highlighting concerns such as the delay in diagnosis and the need for better genetic screening for those with a family history of aortic disease. - Helping to Write Funding Applications
Patient input can make research applications stronger by ensuring that studies are relevant, clearly written, and focused on real-world benefits. - Reviewing Research Proposals
Funding bodies often involve patients in deciding which projects to support. By reviewing proposals, you can help ensure that studies are patient-centred and address real needs. - Ensuring Research Focuses on What Matters Most
Researchers may assume they know what outcomes are most important, but patient involvement ensures studies focus on key concerns – such as improving quality of life, reducing emergency surgery risks, or optimising medication management. - Inspiring and Motivating Researchers
Hearing directly from patients and carers can remind researchers why their work matters, motivating them to stay focused on making a difference. - Helping to Design Studies That Are Accessible
Patient input ensures that research is practical and inclusive. For example, if a study requires frequent hospital visits, patients may suggest alternative ways to collect data that reduce travel burdens. - Avoiding Distress in Research Methods
Your experience can help researchers approach sensitive topics with care. For example, patients may guide researchers on the best way to ask about emotional well-being after an aortic dissection. - Improving Participant Support
Research studies need to be designed with patients in mind. For example, if a study requires participants to stop certain medications temporarily, patients can help identify potential difficulties and suggest solutions. - Identifying and Solving Practical Issues
Patients and carers can spot potential problems in research plans, such as difficult appointment times or unclear study materials, and help improve them before the study begins. - Helping to Collect and Analyse Data
In some studies, patients help researchers interpret findings, ensuring that results reflect real-life experiences and priorities. - Reviewing and Improving Research Materials
You can help ensure that study information, consent forms, and patient guides are clear, easy to understand, and contain the details that matter most. - Sharing Research Findings with the Community
Patients can help communicate study results in ways that are meaningful and accessible – through talks, social media, or patient networks – so that more people benefit from the research. - Helping to Put New Research into Practice
Patients and carers can play a key role in ensuring that research leads to real-world change, such as influencing how hospitals implement new care pathways based on research findings.
What You Can Offer to Aortic Dissection Research
Your Experience Matters
You bring a unique point of view, shaped by your journey with aortic dissection or your role in supporting a loved one. Whether it’s the challenges of getting an early diagnosis, navigating post-surgical recovery, or managing long-term care, your experiences highlight what truly matters to patients. By sharing your perspective, you help researchers focus on the most pressing concerns of those living with aortic disease.
Your Insight Can Shape Research
As someone who has been on the receiving end of healthcare and social care, you have first-hand knowledge of what works well and what could be improved. Your experiences can guide researchers in:
✔ Designing studies that reflect the realities of aortic dissection care.
✔ Identifying barriers to treatment and follow-up care.
✔ Ensuring research findings lead to meaningful improvements in patient support.
By offering your insight, you help shape studies that not only answer scientific questions but also lead to better patient experiences and outcomes.
Your Perspective Complements the Research Team
Research is a team effort, bringing together clinicians, scientists, and public contributors. While medical professionals provide clinical expertise and researchers focus on study design, your lived experience adds a critical layer of understanding. You bring practical knowledge that ensures studies are patient-centred and relevant to those directly affected by aortic disease. As an equal partner in research, you help shape decisions, challenge assumptions, and improve study outcomes.
Becoming a ‘Critical Friend’
One of the most valuable roles you can play is that of a critical friend – someone who constructively challenges researchers by asking the questions others might overlook. This could mean:
✔ Pointing out practical challenges in study design.
✔ Raising concerns about how research findings are communicated.
✔ Ensuring the patient’s voice is not just included but meaningfully considered.
By questioning and advising in a supportive way, you help ensure that research is accessible, relevant, and impactful.
Levels of Engagement in Research
There are different ways to take part in aortic dissection research, depending on your level of interest and availability:
- Consultation – Giving feedback on specific aspects of research, such as reviewing patient information sheets or suggesting improvements to study materials.
- Involvement – Working closely with researchers throughout a study, helping to shape how research is designed, conducted, and analysed.
- Collaboration – Partnering with researchers as an equal team member, contributing to decision-making and ensuring the study stays patient-focused.
- Patient or Public Leadership – Taking a leading role in research, such as shaping research priorities, co-authoring studies, or directing patient engagement strategies.
No matter how much time or experience you have, there is a way for you to make a difference. Your voice is essential in ensuring that aortic dissection research leads to real-world improvements in diagnosis, treatment, and care.