David Bailey

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Creating a Medical Record Exchange for Research

19 August 2014 | 0 Comments | Tags: Healthcare

Google's Sergey Brin and Larry Page recently dismissed healthcare research in America:

Generally, health is just so heavily regulated. It's just a painful business to be in. It's just not necessarily how I want to spend my time. Even though we do have some health projects, and we'll be doing that to a certain extent. But I think the regulatory burden in the U.S. is so high that think it would dissuade a lot of entrepreneurs. -- Sergey Brin

I am really excited about the possibility of data also, to improve health. But that's-- I think what Sergey's saying, it's so heavily regulated. It's a difficult area. I can give you an example. Imagine you had the ability to search people's medical records in the U.S.. Any medical researcher can do it. Maybe they have the names removed. Maybe when the medical researcher searches your data, you get to see which researcher searched it and why. I imagine that would save 10,000 lives in the first year. Just that. That's almost impossible to do because of HIPAA. I do worry that we regulate ourselves out of some really great possibilities that are certainly on the data-mining end. -- Larry Page

However, creating an exchange like the one described by Larry is possible. Let's start by evaluating the interests of the different parties involved:

Both patients and researchers understand they fundamentally need each other to succeed.

Next, as with any project, let's look a how research currently works. Large university medical centers treat lots (millions) of patients per year. These patients' medical records are just now being stored electronically. Researchers at the university can create studies and request medical records. These studies have to first be approved by the university's Institutional Review Board (IRB) before the researcher is allowed access to the medical records. The researcher then performs his or her study and can publish the results.

So, what are the problems with the current system? Like Sergey and Larry said, there is a lot of red tape. Any changes to a study have to be approved by the IRB again. Most universities are limited to just one hospital or a few hospitals. This means they have a limited number of patients, a limited geographic sampling of patients, a limited set of standard treatments, etc. These limits hinder research studies. Also, typically only researchers at universities have access to the university's medical records. A brilliant private practice doctor would have to partner with a university. Multi-university studies require a sponsor at each university and a review by each university's IRB. As you can see, large scale research projects don't happen easily.

So... How do we fix the problem?

We need to create an exchange (data warehouse) for patient records. But where will those records come from? They can't come from the doctors, hospitals, or universities. Those are all regulated by HIPAA. The records must come from the patients themselves. Here's how:

  1. As mentioned above, everyone's medical record is becoming an electronic record. Patients have a right (under HIPAA!) to request a copy of their medical record from their doctor or hospital.
  2. Patients can then take their medical records and upload them into the exchange. The exchange shows them everything they are uploading. It requires the patient to remove some identifiers (name, social security number, etc.) and allows substitutions for other identifiers (home address will be converted into just a zip code). However, the patient has the ultimate approval for what information is uploaded. They can also enter information not in their medical record. For example: How often do you exercise? What do you eat? What do you do for work?
  3. The warehouse stores this information in a consistent, secure manner.
  4. Researchers create accounts with the exchange. They have to provide their medical license information and go through a training program.
  5. Researchers can then create studies, provide a description of the study, and request data. Patients can auto-accept requests for their data, or they can require their approval for each study. The exchange might impose a limit on the amount of data a researcher could request in a time period. Each request is logged in the researcher's account and the patient's account.

Patients can delete their accounts at any time. However, once a researcher has accessed their data, it cannot be revoked. The exchange could charge researchers for each study and pay patients for their records. The exchange could be created as a for-profit company,but patients would be more willing to upload their records to a non-profit. The exchange could also be used by researchers to recruit patients for their clinical studies.

This framework still needs a few tweaks, but it has huge potential. There are issues, technical and legal, to overcome, but they are not impossible.



List of Redeye Flights in the Lower 48 States

12 November 2012 | 0 Comments | Tags: Transportation Travel


An early morning in Chicago


Flying for 1/3 the Price on Delta

16 October 2011 | 0 Comments | Tags: Transportation Travel

Want to get from Albuquerque to Atlanta on the cheap? Don't buy a ticket from ABQ to ATL; get one to CLT (Charlotte). The flight to Charlotte is $212, but a ticket to Atlanta costs $601. The New York Times reported on this phenomenon a while back, but this is the first time I've seen such a drastic difference in fares myself. Buying the ticket with an extra leg to Charlotte results in a 65% savings! Digging deeper into the fares, the trip to Atlanta has the code M while the trip to Charlotte has the code U on both legs. The Fare Chart at cwsi.net/delta lists both codes as discounted coach fares.

If you'd like to take advantage of this unadvertised sale for Atlanta tickets, just buy a ticket to Charlotte. Be aware that you cannot check bags on this flight because those bags would end up in Charlotte. You could also be rerouted if your original flight is cancelled.

It is possible to find other deals such as this one on different routes. It is easiest to find cheaper flights to a major airline hub by looking for a ticket to a close-by city that would require a connection through the hub.

Happy Trails!


HAPPY TURKEY DAY!!!

25 November 2010 | 0 Comments | Tags: Food


Upstate New York


The Internet is a Scary Place

31 October 2010 | 0 Comments | Tags: Rant Tech

Scary Shirt
In honor of Halloween, here is a scary article. Well, maybe only the first half is scary.

Google is the New Microsoft. You have to use them. Microsoft Office used to be the default business app; now, it's Google Search. Everyone's afraid of them. If you're a startup and Google moves into your space, your company is done. They say scary things: "If you have something that you don't want anyone to know, maybe you shouldn't be doing it in the first place." This was said by Google CEO Eric Schmidt in 2009. Here's a great response to this statement by Bruce Schneier, a computer security specialist.

I'd bet that within 10 searches at a new computer, Google can identify who you are. Even if you don't ever log in or have an account, they probably have some algorithm to identify people across the world. Ever searched for your address when getting directions? Ever looked at your house on google maps? What about Googling yourself? Maybe they just know you as someone who likes to search for BBQ places in Los Angeles. Or maybe they saw that you searched for the same restaurant on both your home and work computers the same day. Google can probably put all this together and use it to track everything you do with their services.

Going further, it's not just search. Google maps has a record of everywhere you've been or want to go. Google Ads can track you across many of the sites on the Internet. Gmail keeps track of everyone you know, how they interact with you and what they know about you. YouTube, Blogger, Picasa, Groups, Health and dozens of other Google sites can constantly collect information about you. Google mobile tracks your location when you search for nearby places. Google's Chrome records every keystroke you type in the bar at the top, and maybe every page you visit. Chrome OS would be able to track everything you do with your computer. Android could do the same with your mobile phone. With or without an account, Google can find you on the Internet.
Maybe I should just live in the woods.


It's safe to say that Google knows more about you than anyone single person on Earth. Now, reread that quote by CEO Eric Schmidt and tell me if you're scared.: "If you have something that you don't want anyone to know, maybe you shouldn't be doing it in the first place." Maybe I'm just crazy.

For more of this conversation, read this New York Times article about advertising and privacy.

Now onto some lighter thoughts. All the best college grads wanted to work for Microsoft in the 90s, Google in the 2000s, and now it seems like Facebook is the new kid in town, along with other startups like Digg and Reddit.

Facebook is strange because, like Google, it makes most of its money from ads. It is still hard for me to believe that multi-billion dollar companies run on little 2-inch squares on the sides of websites. Facebook, also like Google, appears to care more about pushing their own technology agenda than its users' privacy. It seems that ever since the site broke out of the college market, Facebook has been upsetting users by creating products that, by default, decrease privacy. While a select few have stopped using Facebook, it seems that most put up with the service because they need it to stay 'connected' with their friends.

Microsoft is the new open source champion. Their .NET environment is open sourced in the mono project, and MS has gone so far as to create a "Community Promise" that they will not sue anyone for patient infringement involving mono. They also no longer have a monopoly on web browsers because of Firefox and Chrome (and Safari and Opera). Their search engine remains in the third place position (although I do like their maps and flights features). It would seem as if MS cares more about its Xbox and SYNC product lines, than it's computer software or Internet properties.
Happy Halloween!


Microsoft is more like an old guy now. Think News Corp, Comcast, Verizon, Time Warner, etc. These companies don't really have a handle on a young industry that is moving fast. They're worried their businesses might soon disappear so they buy a startup here or there. But more often than not, they buy an AOL (Time Warner) or a MySpace (News Corp) that is on the way down.

What about Apple? Apple is off in their own world pretending like they're not paying attention to what's going on. They ignore their hardware compeditors (Dell, HP, Lenovo) by pricing their products a couple hundered dollars higher. Their phones only run on AT&T but that doesn't bother them. Their iPods took command of the music player market years ago. The iTunes Store competes with Amazon, but not really. Apple people are just that, Apple people. (Some use the word fanboys.) They often use the services of the other companies mentioned here, but they usually go for the Apple product if it exists.

Apple is always trying to drive Mac sales. That's why they created the iPod, iPhone and iPad. These devices were all made to lure customers into the Mac world. However, it just so happened that these devices dominate their respective markets. Good for Apple.

Other weird things: Oracle's purchase of Sun kinda sounds like eBay's acquisition of Skype a few years back. "What's a database company going to do with Java?" is a lot like "what's an auction web site going to do with Internet communications?" Amazon has an interesting position with S3 and AWS as they could soon be (or already are) running much of the Internet.

That's all for now. Happy Halloween!

 
background: Yankee Stadium
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