Empowering Patients: Insights from the 7th EpiCom Workshop

Sophie Restellini, EpiCom Member

Sophie Restellini

At the upcoming ECCO’24 Congress in Stockholm, the Epidemiological Committee (EpiCom) will hold its 7th Workshop on Wednesday, February 21.

In the dynamic landscape of healthcare, patients are now assuming a pivotal role beyond their traditional status as care recipients. They are emerging as active partners, capable of contributing invaluable insights to medical research. The theme of the 7th EpiCom Workshop will be "The patient as an Epidemiologist", and the workshop will aim to shed light on the empowering potential of patient involvement, underscoring the significance of utilising appropriate tools to assess clinically relevant outcomes. Moreover, it will emphasise the pivotal role of digital tools in enabling patients to directly contribute to the research process.

The first session of the workshop will provide a comprehensive overview of the methodological approaches aimed at enhancing patient involvement in research. Participants will delve into the intricacies of engaging patients as active contributors, recognising their unique insights and experiences. Through the examination of a range of techniques, from participatory action research to co-design methodologies, it is anticipated that delegates will gain valuable insights into how to foster collaborative partnerships with patients.  Assessment of the psychosocial aspect of IBD will be addressed, and the information that patients generally give to nurses rather than doctors will be discussed in a tandem talk involving two Belgian colleagues, Peter Bossuyt and Katrien Asnong; furthermore, an IBD nurse will discuss how to use this important information.

A recurring theme throughout the workshop will be the transformative potential of digital tools in empowering patients to directly contribute to the research process. In an age of technological advancement, patients have unprecedented access to tools that enable them to monitor their own outcomes and provide critical data. From wearable devices to mobile applications, the possibilities for patient-generated data are boundless. We will emphasise the importance of harnessing these digital tools to augment traditional research methodologies, ultimately leading to a more comprehensive and patient-centered understanding of health outcomes. This first session will stress that involving patients from the outset ensures that research questions and methodologies are not only scientifically rigorous but also align with the real-world experiences of those affected by the condition.

The second session of the workshop will address the practical application of patient empowerment in current healthcare practice and explore strategies for designing studies that deeply involve patients in the research process. This session is expected to serve as a bridge between theory and practice, providing delegates with tangible tools that can be implemented in their respective professional settings. Through case studies and interactive discussions, participants will gain a nuanced understanding of how patient involvement can be seamlessly integrated into clinical practice. Additionally, the session will explore the intricacies of study design, equipping attendees with the skills needed to develop research protocols that place patients at the heart of the investigative process.

The workshop will end with an eagerly awaited talk by Alissa Walsh from Oxford, United Kingdom, that will consider future perspectives on the role of patients in our everyday practice and in the research process, as well as the impact of our collaboration and the challenges that it faces.

It is expected that the workshop will equip delegates with the skills and knowledge required to apply appropriate methods to enhance patient involvement in research, capture relevant disease outcomes from patients in both clinical practice and research settings, utilize digital tools to directly collect information from patients and develop future research studies deeply involving patients in the research process.

We hope to see many of you at the EpiCom Workshop in Stockholm during ECCO’2024!

Posted in ECCO News, Committee News, Volume 18, Issue 4, EpiCom