Ep. 53 - Autonomy and Data Liberation with Hugo Campos
In this installment of the Future Grind podcast host Ryan O’Shea sits down with well known data liberation advocate Hugo Campos. Hugo lives with an Implantable Cardioverter Defibrillator, or ICD, which monitors his heart and helps keep him alive. However, the lack of transparency coming from the medical community about his device and the data it collects has lead Hugo on decade plus mission to advocate for data liberation and patient engagement. Hugo has been honored as a White House Champion of Change for Precision Medicine by President Barack Obama, and works with Stanford Medicine X, which is Stanford's premier program on emerging technology and medicine, focusing on patient-centered innovation. Hugo has also shared his story in a TEDx talk at Harvard in 2011.
Today Hugo is a participant ambassador for the All of Us Research Program, an initiative from the NIH focused on building a diverse health database featuring over 1 million participants which will drive future scientific and medical breakthroughs.
They discuss the value of data, inherent issues in the medical industry, the importance of autonomy, opportunities presented by the All of Us program and much more.
And we have a special announcement - we plan to send an episode of the Future Grind podcast to the Moon on board Astrobotic’s first mission, and we wanted to provide you an opportunity to fly alongside us by sending your own digital files and photos to Moon! Find out more and get involved here - To The Moon
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Show Notes
The Start of Hugo’s Journey [3:17]
Hugo’s Life Before The Journey [8:34]
How ICD Data Interrogation Works [10:46]
Hugo’s Quest for Patient Autonomy [14:26]
How Hugo Gets His Data [17:13]
Hugo’s Goal of Autonomy and Information [20:57]
Health Experiments in Quantified Self [24:40]
Can People Be Trusted with Their Data [29:45]
Roadblocks to Change [34:37]
Financial Aspects of Remote Monitoring [35:51]
Apple, Google, & Healthcare Data of the Future [37:49]
The All of Us Research Program [41:30]
Altruism, Self-Interest, & Value in the All of Us Program [45:35]
Mentioned
Medical Terms -
Hypertrophic Cardiomyopathy
Vasovagal syncope
Mitral Valve Prolapse
Atrial Fibrillation
Tachycardia
AliveCor Kardia
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