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30 April 2024
COMMUNITY, - Medicines

In April, EFA organised a capacity building activity on ‘Patient involvement in clinical development: practical implications for meaningful engagement’. In this year’s Meet and Greet the EU training, we focused on new ways to facilitating patients’ access to research and clinical trials as well as explaining the EFA Members community the new EU guidance on Good Lay Summaries of clinical trials or any research, understandable and relevant for patients.

The Meet & Greet with the EU series is part of EFA’s 2023 Capacity Building Programme. This year’s event focused on two topics:

  • decentralised clinical trials, a new way to participate in clinical research thanks to a trial design that includes the use of the technology by the participants.
  • the new EU guidance on Good Lay Summary Practices, an essential tool to facilitate the understanding of complex medical information for patients and general public.  

The Meet & Greet with the EU served to deepen knowledge of patient engagement in unmet medical needs and research, and offered an overview of the latest trends and tools available.   

Patients’ involvement in clinical trials for better research outcomes

EFA President Marcia Podestà opened the training highlighting the indispensable role of patient engagement in research, emphasising the multifaceted insights patients offer across physical, mental, economic, and social dimensions. European Medicines Agency (EMA) Florian Lasch shed light on EMA's mission to foster scientific excellence in the evaluation and supervision of medicines, with a central focus on patient involvement. He underscored the importance of patient support in clinical trial design and methodology. 

EFA President, Marcia Podesta

EFA President, Marcia Podestà

The event featured sessions on various facets of patient engagement in research and clinical development. Session 1 delved into the fundamentals of patient involvement in research, with speakers advocating for patients' roles as partners and decision-makers. European Patients Forum (EPF) Claudia Louati highlighted the misalignment of many clinical trials with patient priorities and advocated for patient-centric approaches, especially in decentralised clinical trials. Claire McQuade, a patient advocate living with COPD and a researcher, shared her experience, stressing the importance of aligning research questions with patient needs and ensuring diverse and meaningful patient participation

Potential and clinical development of decentralized trials

Session 2 sparked a dynamic panel discussion on on-site versus decentralised clinical trials, featuring esteemed speakers from the EMA, AstraZeneca, EURORDIS, and the Living with Allergy Association (EFA Member from Turkey). In this exchange within the healthcare landscape, the voices of Gill Hayes-Bell, François Houÿez, and Özlem Ceylan resonated strongly, each advocating for a more patient-centric approach to clinical trial design.  

Speakers group

EFA Policy and Communications Directors, Isabel Proaño and our speakers Florian Lasch (EMA), François Houÿez (EURODIS), Özlem Ceylan (Living with Allergy Association) and Gill Hayes-Bell (AstraZeneca)

The discussion provided insights ranging from the necessity of continuous patient involvement to challenges and opportunities presented by decentralised trials, particularly amidst the COVID-19 pandemic. The dialogue underscored the imperative of designing trials that truly reflect patient needs, both medically and meaningful participation needs, and integrating patient feedback throughout the process. 

In this dialogue, a resounding call for patient empowerment and inclusivity echoed, laying the groundwork for a more compassionate and effective future in clinical research. 

Advancing lay summary practices

Session 3 delved into the principles of Good Lay Summary Practices (GLSP) and patient involvement, led by expert trainers from EUPATI. Participants gained invaluable insights into the legal requirements and ethical considerations of lay summary development, emphasizing the need for comprehensive strategies to ensure accessibility and relevance. Participants did practical exercises that enhanced their understanding, reinforcing the importance of clarity, transparency, and patient involvement in disseminating research results effectively. 

Review of the Lay Summary Example

Empowering EFA Community with new knowledge and skills

EFA's Meet & Greet with the EU Training was a great opportunity to come together with EFA Community, experts and researchers to empower participants with practical skills and break barriers on patient involvement in clinical development. As we look towards the future, let us continue to champion patient-centric approaches and collaborative efforts to ensure research outputs meet the needs of the patient community.