In this episode, we delve into Emily’s remarkable journey from a cell biology student to a leading advocate in the biotech field. Emily’s mission is clear: to make complex scientific concepts approachable and to empower patients in medical research. This episode sheds light on the transformative power of patient participation in research and offers practical advice for navigating this intricate world.
Emily’s passion for CRISPR technology and her personal experiences have significantly shaped her career. She emphasizes the importance of making scientific research more inclusive and understandable. One of the key takeaways from this episode is her advice on finding reliable sources for research studies and clinical trials. Websites like clinicaltrials.gov and withpower.com are highlighted as essential tools for patients looking to participate in medical research. Emily also shares her insights on ensuring fair compensation and understanding crucial elements of patient research consent forms.
Navigating patient research consent forms can be daunting, but Emily provides expert guidance to ensure patients are well-informed and fairly compensated. She discusses the limitations of negotiating compensation due to the strict protocols set by the IRB and the importance of providing feedback to research teams. Key elements to look for in consent forms include the return of individual data, understanding incidental findings, the use and sharing of data with other entities, and ensuring transparency in data transactions. Practical tips, such as requesting the consent form before an onboarding call and using keyword searches to quickly locate important information, are also shared to help patients navigate consent documents effectively.
The power of patient communities is another significant theme in this episode. Emily explores how these communities, particularly for those using medical devices or participating in research, can foster a sense of control and empowerment. Privacy concerns are a challenge in creating these communities, but self-organized groups on social media platforms like Facebook and Reddit can provide invaluable support and insights. Emily highlights the therapeutic power of agency and hope that comes from participating in research, emphasizing how being part of a study can provide patients with a sense of control over their condition. This sense of empowerment is crucial, especially when patients often face dismissive experiences in clinical environments.
Emily’s story is not just about her professional achievements but also about her personal journey and the experiences that have driven her passion for patient advocacy. Growing up, she witnessed the impact of disease on her loved ones, which sparked her interest in understanding the microscopic world of biology. Her fascination with CRISPR technology led her to Berkeley, where she studied under Jennifer Doudna, one of the co-creators of this groundbreaking genetic editing technology. These experiences have fueled her mission to bridge the gap between complex scientific research and patient understanding.
The conversation also delves into the practical aspects of research participation, such as understanding the different types of compensation patients can expect. Emily discusses the variety of compensation options, from monetary payments to keeping devices like smartwatches. She stresses the importance of breaking out of the transactional model of research and moving towards a more collaborative process. Returning patient data, even if not clinically validated, can be a valuable form of compensation that offers patients insights into their own health.
Ethical considerations are another crucial topic discussed in this episode. Emily emphasizes the importance of reporting any unethical practices to the IRB and ensuring that patients feel empowered to withdraw their consent if necessary. The history of ethics in scientific research has been fraught with challenges, but significant strides have been made to protect patient rights and ensure transparency.
Emily’s insights into the long-term impact of patient participation in research are profound. She hopes that this movement towards patient empowerment and data transparency will lead to a more collaborative and inclusive medical research community. By asking critical questions about data return and compensation, patients can shift the dialogue and power dynamics in their favor.
In conclusion, this episode is a treasure trove of information for anyone interested in the intersection of patient advocacy and medical research. Emily’s journey is a testament to the power of combining scientific knowledge with a passion for patient empowerment. Her practical advice and insights offer invaluable guidance for navigating the complex world of medical research, ensuring that patients are well-informed, fairly compensated, and truly empowered.
Bridging the Gap: Patients in Medical Research with Emily (buzzsprout.com)
https://www.emilyharari.com/
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