#sxsw #decodingme Decoding Our Bodies: New Era of Citizen Health Live Notes @sam_debrouwer @lindaavey @jessicarichman @DrGreene @wearecurious

Looking to doctors for diagnosis… In Greek means to know apart.

Interactive health.

Greene: asked panelists to tell personal story of what motivated them to do their work.

Avey: founder of worlds largest database. Had a friend who took an allergy med that one day woke up with egg yoke- colored eyes. Severe reactions to drugs. Her motivation to start 23 and me was this.

Sam DeBrouwer: Scanadu co-founder. Her son was ill. Limitations to what she could process and what doctors could do. She realized others in same situation. And that smart phones ubiquitous, allows us to connect. New sensors on market. Potential of machine learning. Design: attention to good design is improving. Scanadu product allows us to measure own bodies.

Jessica Richman: wants to fix broken systems. Big Data was once called computational social science. Citizen science is about being heard and not ignored. Biome is about measuring poo of bacteria. 

Dr. Alan Greene: Chief Med Officer Scanadu — levels of authoritarianism and participate tin. For level of engagement, increase of engagement meant better outcomes. (Study name I missed).

Richman: almost all medical practice based on Petri dish, but we are covered in bacteria. Has the largest micro biome database in world. Turning in direction of citizen empowerment. More dignified.

DeBrouwer: we don’t have data on go. Dignity: we have been treated as average, but we are unique. I am a number. A very unique number.

Dr. Greene: “Dia” implying uniqueness. 

[my comment: do I care about privacy if sharing my data will help me get better?]

Avey: about “we Are Curious” when you look at a disease diagnosis, lot of grey area. How appropriate is a diagnosis. How appropriate is the diagnosis. Do you share with people who have it in common.

Q: Danish system does not incentivize sharing this info with doctors. 

Richman: doctors are scared of liability, trained to follow protocol. So thinking of ways to make ubiome 

Q: 23 and me restricted from discussing health, only can do ancestry

Richman: 23 and me pioneered citizen powered health

DeBouwer: we have been excluded from our own health for thousands of years. This will give us all potential to learn. Triage can be faster, more automated. [comment: makes me think of John Havens and need to make ethical decisons]

Richman: instead of doctor being center of knowledge repository, patients will be at center. Experts will have a place. Just that there is too much of a dichotomy. What will happen is patients will learn more about themselves and then consult experts. Legitimate concerns about who should have info and at what pace.

Avey: picking up diagnosis earlier.

Dr. Greene: early info on diagnosis. Study: people who got results of tests earlier actually felt better and made fewer unnecessary calls.

Society for Participatory Medicine: has list of practitioners

– idea for list of data source

Q: what would drive the larger change?

Richman: insurance about costs; doctors care about utility more; Pharma cares about FDA; FDA cares to protect people from menaces. As you tweak, have to think about stakeholders. You think about all these stakeholders, we have not thought about patients.

DeBrouwer: thinking about price versus value.

Q: tools on horizon for cross correlation?

Avey: looking at analytics for We Are Curious, working with Steven Wolfram

How to understand what is meaningful. Hidden data around us every day like CO2 in house affecting sleep.

Q: how does this relate to public health (Ernesto asked, someone they knew)

Quantified Self

Richman: up pipeline from public health. [ocurred to me that ACA more amazing than I’d considered, because brave about tech, fearless about failing]

DeBrouwer: ecosystem is being built right now.

Avey: what’s cool about US is exactly that we are a melting pot. We can learn and apply because of diversity.

Q: functional doctors not taking insurance

Q: discharges? Health loop start-up

Q: breast cancer survivor — researchers lined up for her — Richman, we do collaborate

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: