Real-World Examples of Patient Involvement in Designing Clinical Trials

Posted on January 28, 2025
Juhi Kunde, Director of Science and Research Marketing
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Read time: 2 minutes.

Here we present the final video in our three-part series about how patients and researchers can work together to develop clinical trials.  

In the video below, LUNGevity again partnered with Rising Tide for Clinical Cancer Research to illustrate the power of having patients contribute to the research process. We use a real-world example to learn about patient-researcher collaborations through the POSITIVE study, a breast cancer-focused clinical trial. You can watch the entire video, or use the timestamps below.

Make sure to watch parts 1 and 2 of this series here: 

  1. How Can Patients and Researchers Design Clinical Trials Together 
  2. Developing Clinical Trials that Account for the Realities of Patient Life

Introductions: 0:00 – 1:54 

Meet moderator Alexandre Costa Alencar, MD, head of cancer research programs at Rising Tide Foundation for Clinical Cancer Research, as he establishes the goals of this webinar series and introduces the panelists. 

  • Teresa Ferriero, PhD, patient partner of the POSITIVE study 
  • Olivia Pagani, MD, scientific chair of the POSITIVE study 
  • Monica Ruggeri, operational lead of the POSITIVE study 

Explaining the POSITIVE study: 2:10 – 5:59 

Learn more about the POSITIVE study, an international clinical trial of 500 patients, to understand its important goals.   

How the Collaboration Began: 6:00 – 10:52 

The panelists emphasize the importance of the POSITIVE study and discuss how initial patient survey data allowed the researchers to begin the study design process with patients’ needs in mind.  

Examples of Empowering Patients: 10:53 – 25:17 

Here the panelists discuss the roles of patient involvement in many aspects of the POSITIVE clinical trial—including participation in the steering committee, fundraising events, and dissemination of study results.   

Effective Involvement of Patients: 25:18 – 50:25 

Researchers share their key considerations when choosing patients to collaborate with. They also note that it’s time-consuming to identify the right patients and build these relationships—but the investment is worth the impact. Don’t miss this frank discussion as the panelists explain their expectations from the collaboration process, such as including financial compensation and emotional fulfillment. 

Wrap-up Discussion and Key Takeaways: 50:26 – 59:10 

Panelists discuss the biggest learnings and challenges from collaborating on the POSITIVE study and offer final tips for successful patient-researcher partnerships.