Healthcare Infrastructure, ALS Research and Reliable Data with Indu Navar

Open||Source||Data

This episode features an interview with Indu Navar, CEO and Founder of EverythingALS, a patient-driven non-profit, bringing technological innovations and data science to support efforts from care to cure, for people with ALS. Indu’s impressive career includes being an original member of the WebMD engineering team, where she was instrumental in using emerging technologies to achieve application scalability and performance.

In this episode, Sam sits down with Indu to discuss healthcare infrastructure applications, her strategies for providing reliable patient data, and the future of ALS research.

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“We said, ‘Okay, we're going to make this a citizen-driven research.’ That means patients are going to come and enroll because it's their project and it's patient-driven. So, it's a patient-driven, open innovation. So, once you do open patient-driven, open innovation, now we are the custodians of the data. Patients own the data, so all the data is shared with the patient. That was not done before in any of the research. And so, we give all the data back to the patients. And of course, we give them metrics as well. What was the rate of their speed of their speech? And if they don't want to see it, it's fine, at least they have it. And that data, we are the custodians and as custodians we share the data. So, once we did this model, we got almost close to one thousand people enrolled, consented, within 16 months. As supposed to about 25 people in one year or 50 people in one to two years.” – Indu Navar

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Episode Timestamps:

(01:19): What’s changed for Indu in the last tear

(05:46): What data infrastructure was like 25 years ago to solve for health outcomes

(13:00): Indu’s personal experience with healthcare data

(16:47): What Indu is looking forward to in ALS research

(20:43): How regulatory establishments have shifted in healthcare

(30:31): Where Indu wants to see EverythingALS go in the next year

(36:28): One question Indu wishes to be asked

(38:28): Indu’s advice for people inspired by EverythingALS

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Links:

LinkedIn - Connect with Indu

Twitter - Follow Indu

Twitter - Follow EverythingALS

Visit EverythingALS