In recent years, patient associations have emerged as pivotal players in medical research, contributing invaluable insights and driving innovations that resonate with patient needs. These organisations, often founded and led by individuals directly affected by specific conditions, bring a unique perspective that traditional research teams may lack.
That’s the case with our partner EUpALS. To facilitate better alignment between patients and the clinical development process of ALS therapies, EUpALS has set up a Patients and Carers Expert Board. This group of patients and carers provides the industry with input on specific study information based on their real-world experiences with ALS. Univocally, their slogan is “Nothing about us without us!”.
By listening to patients and carers, the industry can adopt practical solutions that will enhance the experience of participants in their studies. This will likely have a positive effect on the attractiveness of studies to potential participants. By creating study designs that work for patients and carers, the burden for enrollment in clinical studies will be lowered, and the ability of participants to remain in studies will be increased. By this, sponsors will have less missing data, and participants will more likely continue taking an experimental medicine throughout the disease course.
Real-World Data: Patient Insights for Better Outcomes
The utilization of real-world data (RWD) is revolutionizing the healthcare landscape, providing insights that traditional clinical trials may not capture.
From the patient perspective, the use of RWD can offer the advantage of reflecting the diverse and dynamic nature of everyday clinical settings, capturing variations in patient populations, treatment regimens, and health outcomes. This comprehensive view can lead to more personalized and effective healthcare strategies, tailored to real-world circumstances rather than idealized trial conditions.
However, the use of RWD also raises important considerations about data privacy and consent. Patients are increasingly aware of the need for robust safeguards to protect their personal health information. Transparent communication about how data will be used, who will have access to it, and the measures in place to ensure its security is essential to maintaining trust and participation in RWD initiatives.
For these reasons, the Real4Reg project has several activities designed to empower patients and enhance the quality and utility of real-world data. These activities include:
- Patient-Dedicated Events: One such event is an online workshop entitled Demystifying Real-World Data – Insights for Patients, which will take place later this year.
- Patient Survey: Recently, we conducted a survey to collect the perspectives and opinions of patients regarding the use of RWD/RWE. The results of this survey will be available in the coming months, providing valuable insights into patient views.
- Patient-Dedicated Website Section: Our website features a dedicated section for patients, providing information about the project in lay language to ensure accessibility and understanding. Have a look here
We will continue working with the patients and for the patients!