Bridging the Gap: Patients in Medical Research with Emily

My Spoonie Sisters

Are you curious about how patient participation can revolutionize medical research? Join us as we sit down with Emily, a dedicated bio-enthusiast and biotech professional, to uncover her journey from cell biology student to trailblazer at the biotech startup Immu. Emily shares her mission to make complex scientific concepts approachable, fueled by her passion for CRISPR technology and personal experiences that shaped her career. You’ll gain exclusive insights on finding reliable research studies and clinical trials and practical advice on leveraging platforms like clinicaltrials.gov and withpower.com.
Navigate the intricate world of patient research consent forms with Emily’s expert guidance on ensuring fair compensation and understanding key elements such as incidental findings and data transparency. We also explore the power of patient communities, especially for those using medical devices or participating in research, and how these communities foster a sense of control and empowerment. Listen in to discover how being a part of research can transform patient experiences, offering hope and a profound sense of agency and belonging.
https://www.emilyharari.com/
https://www.instagram.com/thepatientscientist?igsh=NHgzejRzb2FreHE2

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Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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Website:
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Chương

1. Research Participation and Patient Resources (00:00:00)

2. Understanding Patient Research Consent Forms (00:12:10)

3. Patient Empowerment in Medical Research (00:28:37)