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Patient Perspective: Increasing Patient Involvement and Centricity in Clinical Trials

  • January 3, 2020

  • Patients as Partners reporter Danny McCarthy spoke to six patient advocates about how to increase patient involvement and centricity in clinical trials.

    Designing clinical trials, from protocol to conclusion, is an arduous procedure that sets up the process of the entire trial. If companies are not including patient involvement, they’re already behind. 

    It can be as simple as getting patients in the room: early, and often. “There is a need to improve the mechanism for listening to and engaging with patients at all stages of clinical trials,” said Alfred Samuels, a prostate cancer patient who participated in the STAMPEDE trial. 


    Update what counts as “important”
    Including patients from the beginning, and measuring their voices, can help to formulate endpoints that benefit them as much as it benefits the trial. 

    “I’m working on a project at the moment with a company who are doing patient-reported outcomes. And one of the things they’re doing is setting up a questionnaire where they think of basic things that most people would do every day,” said Lesley Gosden, a Parkinson’s patient who participated in the GDNF trial. She found that her quality of life improved while on the trial, which ultimately failed to meet its endpoints or statistical significance. “Until they start doing assessments that actually equate to what you do in your everyday life, it’s very difficult to assess whether or not they’re improving or degenerating.”

    Cindy Geoghegan, a breast cancer survivor and activist, expressed a similar sentiment. “We need to measure things that are important to people,” she said. 


    Change the narrative
    Jamie Troil Goldfarb
    recommended “an enormous public service announcement” in the spirit of the national, anti-tobacco Truth campaign to create awareness about clinical trials. “It would help to normalize the conversation about clinical trials, and help to raise awareness in the general public for clinical trials as treatment options,” she continued. “The best, most patient-centric trial in the world is still going to have enrollment issues because it’s a clinical trial awareness issue we have.” 

    “Many patients harbour misconceptions about trials,” said Alfred. “They feel that they will be treated like guinea pigs.” 

    Tina Aswani Omprakash, a Crohn’s patient and health advocate, suggested reframing the conversation around clinical trials and increasing transparency. “Patients need to hear that they’re in the driver’s seat,” she said, suggesting something as simple as pamphlets in doctor’s offices that illustrate how the patient can be an active participant in the trial. “I think that there just isn’t enough understanding of how the process works from start to finish.”  


    Consider the patient journey
    Providing care after a trial ends can be crucial to a patient’s experience. Tina had positive memories of her medical device trial, but details how it wasn’t the same for a friend whose clinical trial was abruptly ended. “It was so crushing for her because she was one of the few patients who was actually doing well on the medication.” Lesley’s trial involved a surgery that implanted a catheter into their head; provisions needed to be made for aftercare. The trial might end, but “for the patient, it doesn’t end there,” she said.  

    “A lot of effort goes into mapping a patient journey. You put us on your road,” said Cindy. “And when you’re done with me, whether the trial ends, or the drug doesn’t work, I’m put back on my road. And I can’t even get the map. I have to go back into my world.”


    Incorporating the patient voice requires active and early effort, starting with corporate culture, according to Alicia Staley, a breast cancer survivor and social media advocate. 

    “When you’re embedding the concepts of patient centricity and engagement, before you’re even getting to the point where you’re designing the clinical trial,” said Alicia, “you’re going to be much more apt to be able to recognize the patient voice and utilize the patient voice.” 


    Patients experienced in clinical trials should know about both the Patients as Partners Europe (January 27-28, 2020, in London) and Patients as Partners US (March 16-17, 2020, in Philadelphia) events. Both programs offer scholarships for patients in clinical trials upon application. For more information, visit