Case Study: The Impact of PPI in AD Research

The Aortic Syndrome Evidence Synthesis (ASES) Study, funded by the National Institute for Health and Care Research (NIHR), exemplifies how Patient and Public Involvement (PPI) can shape the design, development, and delivery of life-saving research. The study focused on improving emergency department diagnostics for acute aortic syndrome (AAS). Through collaboration between medical experts and individuals with lived experience, the study sought to refine diagnostic strategies and ensure more timely and accurate identification of aortic dissection cases.

The Role of PPI in the ASES Study

Patient and public representatives played an essential role in shaping the study, ensuring that research outcomes were not only clinically effective but also practical and meaningful from a patient perspective. A key contributor was Valérie Lechene, a survivor of a type A aortic dissection, whose personal experience influenced key aspects of the study’s approach.

How PPI Shaped the Research Process

✔ Refining Research Priorities – Patients helped highlight the real-world challenges of diagnosing aortic dissection in emergency settings, particularly the delays caused by misdiagnosis and inconsistent recognition of symptoms. Their experiences reinforced the need for research into more efficient and targeted diagnostic pathways.

✔ Ensuring the Patient Perspective in Data Analysis – The study relied on computer modelling and existing data analysis to evaluate the effectiveness of different diagnostic strategies. By incorporating patient input, researchers considered not only clinical accuracy but also the psychological and practical implications of each diagnostic approach, such as unnecessary CT scans and the anxiety of delayed diagnosis.

✔ Enhancing Communication Strategies – Valérie and other public representatives emphasised the importance of clear communication between healthcare professionals and patients, particularly regarding the hereditary risks of aortic dissection and the urgency of early diagnosis. Their input helped shape recommendations for better education and awareness among both clinicians and the public.

✔ Advocating for Future Research Directions – The study’s findings supported a shift in UK guidelines towards a more cost-effective diagnostic model, inspired by Canadian guidelines that incorporate D-dimer testing for intermediate-risk patients before proceeding with CT scans. Patients advocated for further trials to test these recommendations in real-world settings, ensuring that proposed changes would genuinely benefit those at risk.

The Impact of Lived Experience on Research Findings

Valérie’s story brought to life the critical need for accurate and rapid diagnosis. She described how, in April 2019, she was a healthy individual before suddenly experiencing excruciating pain and suffering three strokes due to undiagnosed aortic dissection. Her symptoms were initially mistaken for a panic attack, delaying life-saving intervention.

By sharing her experience, Valérie helped:

✔ Highlight the dangers of misdiagnosis and the need for better emergency protocols.
✔ Advocate for increased awareness among healthcare professionals about the wide-ranging symptoms of acute aortic syndrome.
✔ Emphasise the emotional and psychological impact of delayed diagnosis on patients and their families.

Her involvement ensured that the patient voice was embedded in the study’s outcomes, reinforcing the importance of effective communication, early recognition, and education in aortic dissection care.

Key Recommendations and Future Research

Thanks to the integration of PPI in the ASES Study, several important research recommendations emerged:

Comparing UK and Canadian diagnostic guidelines in a real-world clinical trial to confirm the best approach.
Investigating alternative biomarkers to improve non-invasive diagnostic methods.
Developing tailored diagnostic pathways for individuals with a history of aortic dissection or genetic predisposition to the disease.

Why This Case Study Matters for PPI in Aortic Dissection Research

The ASES Study is a leading example of how Patient and Public Involvement can strengthen research, improve outcomes, and influence national clinical practice. By ensuring that patient experiences and concerns were actively considered, the study made significant progress in identifying safer, faster, and more cost-effective ways to diagnose aortic dissection in emergency settings.

This case study demonstrates that PPI is about genuine collaboration. Patients bring unique insights that help shape research from its initial design to its final recommendations, ensuring that studies lead to real-world improvements in patient care.