13. Diagnostics 2.0. Add USB drives mybasis.com Photo: http://elianealhadeff.blogspot.com/2009/09/neurosky-now-connecting-brains-to.html bodybugg.com
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15. Ask your way to better health . Every curiosity is a study. What is yours ? @erigentry eri@biocurious.org
Editor's Notes
Questions for the audience:
Buttermind is a whimsical example of a study. But what we learned is powerful. 1. We don’t have to wait for SOMEONE ELSE to research topics of interest. 2. People will join you. People want to be a part of the research, if only they are given a chance. 3.We now have that chance. While you are talking about which groups are effected by clincal medicine, click through to watch this screen populate. Continue to click through as you talk about who is affected with social medicine WHAT IS A CLINICAL TRIAL? Clinical trials are studies typically done by research institutions: universities, pharmaceutical companies, medical device companies. They are meant to affect people the elite, like professional athletes, or people with serious and common health problems, like heart disease, diabetes, cancer. But open trials open the doors for people who are (shrug) on the most part OK, pretty healthy, but are interested in improving one area of health, like how their morning runs affect them, whether going gluten free improves well being, and the big one for me, how can I sleep better? [next slide] Tools like the Zeo sleep monitor let’s a person
TRADITIONAL RESEARCH STUDIES are expensive and closed [it costs up to $10,000 to recruit a single patient. Universities take 50% of grants as overhead. Cost to hire outside counsel, IRB: $30,000. From there, the data belongs to researchers, not the people whose lives it affects most]. With open studies, we can do ”JUST IN TIME” research. Can be done easily and readily by patients, interest groups. What do you mean “barriers to entry?” I mean, people want to be part of the research. They want to understand a disease or health problem in many cases and get some actionable research from it.
It is difficult to recruit people who are not intererested. But the truth is, people ARE! People WANT to be involved. Want to join a community. Just never had the chance before now. There’s got to be a better way than forums you have to dig through to get answers. That way is through robust resarch studies. Remember the words and add pictures to prompt the examples. [ADD IMAGES OF THE TWITTER AND THE FACEBOOK AND MEETUP AND QUANTIFIED SELF LOGO and DIYBIO LOG Easy to recruit: Social networking, meetups, blogs People are online People want to do stuff: Quantified Self, MAKE, DIYbio, TED THEN segue into my own study on sleep and orange glasses. [How many people here have trouble sleeping? (I put up two hands) I have had since I was 8. ]
A Quantified Self Boston member recently wowed the audience when he presented his data from using blue light blocking glasses, and measuring his sleep using the zeo. The zeo is an eeg that is worn around the head at night that tracks your brain waves – or your cycles of sleep. The blue light blocking glasses block exposure to blue light (as the name suggests), which can come from video games, laptops, tv and phones – allowing your body to produce melatonin. His results were staggering! He found that wearing the glasses reduced the amount of time it took him to fall asleep from 35 minutes to 5 minutes and increased his deep sleep (or the time during which your body repairs itself) from 60 minutes to 85 minutes
(do people with this gene lose weight when they go gluten free?). (share your gene of interest, ask participants to cut out gluten for a period then eat gluten and to weigh themselves and answer subjective measures (do I feel better, look better?)). Run the study. Get results. You can even publish in the journal of participatory medicine. Because, guess what? you just did science!
It took an overhaul of my brain to think that I could do this too. But there’s no reason to think participation ends at giving others your data. You too have the power to create research. Please, go forth and create open health studies. Thank you.
