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Vice President Joe Biden Speaks at Health Datapalooza

Posted on May 10, 2016 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I’ve always wanted to attend Health Datapalooza. It seems like a great event and has a really amazing group of people. However, it’s always in DC (at least so far) and I didn’t want to travel. So, I’ve had to follow along from home watching the #hdpalooza hashtag. There’s been a lot of great insights into healthcare and what’s happening with healthcare.

One session I really wanted to see was Vice President Joe Biden’s keynote. The good thing is that ePatient Dave recorded it on his iPad and made it available:

Considering Biden’s involvement in the Cancer Moonshot and his own personal experience in the healthcare system taking care of his son, he provides some great perspective.

Not So Open: Redefining Goals for Sharing Health Data in Research

Posted on June 24, 2014 I Written By

The following is a guest blog post by Andy Oram, writer and editor at O’Reilly Media.

One couldn’t come away with more enthusiasm for open data than at this month’s Health Datapalooza, the largest conference focused on using data in health care. The whole 2000-strong conference unfolds from the simple concept that releasing data publicly can lead to wonderful things, like discovering new cancer drugs or intervening with patients before they have to go to the emergency room.

But look more closely at the health care field, and open data is far from the norm. The demonstrated benefits of open data sets in other fields–they permit innovation from any corner and are easy to combine or “mash up” to uncover new relationships–may turn into risks in health care. There may be better ways to share data.

Let’s momentarily leave the heady atmosphere of the Datapalooza and take a subway a few stops downtown to the Health Privacy Summit, where fine points of patient consent, deidentification, and the data map of health information exchange were discussed the following day. Participants here agree that highly sensitive information is traveling far and wide for marketing purposes, and perhaps even for more nefarious uses to uncover patient secrets and discriminate against them.

In addition to outright breaches–which seem to be reported at least once a week now, and can involve thousands of patients in one fell swoop–data is shared in many ways that arguably should be up to patients to decide. It flows from hospitals, doctors, and pharmacies to health information exchanges, researchers in both academia and business, marketers, and others.

Debate has raged for years between those who trust deidentification and those who claim that reidentification is too easy. This is not an arcane technicality–the whole industry of analytics represented at the Datapalooza rests on the result. Those who defend deidentification tend to be researchers in health care and the institutions who use their results. In contrast, many computer scientists outside the health care field cite instances where people have been reidentified, usually by combining data from various public sources.

Latanya Sweeney of Harvard and MIT, who won a privacy award this year at the summit, can be credited both with a historic reidentification of the records of Massachusetts Governor William Weld in 1997 and a more recent exposé of state practices. The first research led to the current HIPAA regime for deidentification, while the second showed that states had not learned the lessons of anonymization. No successful reidentifications have been reported against data sets that use recommended deidentification techniques.

I am somewhat perplexed by the disagreement, but have concluded that it cannot be resolved on technical grounds. Those who look at the current state of reidentification are satisfied that health data can be secured. Those who look toward an unspecified future with improved algorithms find reasons to worry. In a summit lunchtime keynote, Adam Tanner reported his own efforts as a non-expert to identify people online–a fascinating and sometimes amusing tale he has written up in a new book, What Stays in Vegas. So deidentification is like encryption–we all use encryption even though we expect that future computers will be able to break current techniques.

But another approach has flown up from the ashes of the “privacy is dead” nay-sayers: regulating the use of data instead of its collection and dissemination. This has been around for years, most recently in a federal PCAST report on big data privacy. One of the authors of that report, Craig Mundie of Microsoft, also published an article with that argument in the March/April issue of Foreign Affairs.

A simple application of this doctrine in health care is the Genetic Information Nondiscrimination Act of 2008. A more nuanced interpretation of the doctrine could let each individual determine who gets to use his or her data, and for what purpose.

Several proposals have been aired to make it easier for patients to grant blanket permission for certain data uses, one proposal being “patient privacy bundles” in a recent report commissioned by AHRQ. Many people look forward to economies of data, where patients can make money by selling data (how much is my blood pressure reading worth to you)?

Medyear treats personal health data like Twitter feeds, letting you control the dissemination of individual data fields through hash tags. You could choose to share certain data with your family, some with your professional care team, and some with members of your patient advocacy network. This offers an alternative to using services such as PatientsLikeMe, which use participants’ data behind the scenes.

Open data can be simulated by semi-open data sets that researchers can use under license, as with the Genetic Association Information Network that controls the Database of Genotypes and Phenotypes (dbGaP). Many CMS data sets are actually not totally open, but require a license to use.

And many data owners create relationships with third-party developers that allow them access to data. Thus, the More Disruption Please program run by athenahealth allows third-party developers to write apps accessing patient data through an API, once the developers sign a nondisclosure agreement and a Code of Conduct promising to use the data for legitimate purposes and respect privacy. These apps can then be offered to athenahealth’s clinician clients to extend the system’s capabilities.

Some speakers went even farther at the Datapalooza, asking whether raw data needs to be shared at all. Adriana Lukas of London Quantified Self and Stephen Friend of Sage Bionetworks suggested that patients hold on to all their data and share just “meanings” or “methods” they’ve found useful. The future of health analytics, it seems to me, will use relatively few open data sets, and lots of data obtained through patient consent or under license.

Support Health Code-A-Palooza Team and Our Very Own Mandi Bishop

Posted on May 30, 2014 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

I’m sure that many of you have enjoyed the writings of Mandi Bishop (maybe more famously known as @mandibpro on Twitter). I feel lucky to have her amazing insights on this blog. I’m also really excited for Mandi, because her and her team are competing in the Code-A-Palooza competition that’s part of the Health Datapalooza events in Washington DC. You know that Mandi’s a true data geek when she compares her participation in the event like the Oscars where “it’s an honor to have been nominated.”

What’s most important is that Mandi and her team (Lauren Still and Nick Kypreos) need your help and support. They’ve created a MedStartr crowdfunding campaign where you can get access to their work and support their efforts. Obviously, it’s not cheap for an independent team like them to compete in the challenge.

They have to be specifically vague in what they’re doing per the Code-A-Palooza rules, but here’s the description of the project they’re working on:

There is no simple solution to find out whether Medicare coverage is available and accepted for YOUR specific healthcare needs wherever and whenever you wish to go. Team ForiDUH is designing a product to make healthcare as accessible as GPS. We need your help to get to Washington, DC and win the Health Data Consortium’s Code-A-Palooza! [all donations are tax deductible!]

I’ve actually seen a preview of their presentation and their solution and it’s a pretty slick idea and use of the Medicare data. While still pretty vague, I think this slide illustrates their solution pretty well and how it can be useful to patients and health systems:
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Check out more details on what they’re doing and support their work on the Team ForiDUH MedStartr page.

Farzad Mostashari Tweets #HDPalooza

Posted on June 4, 2013 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Health data geeks from across the US have descended on Washington DC this week for what’s called Health Datapalooza. It’s a sort of Mecca for healthcare data sharing where health data geeks virtually hold hands and sing koombaya as they circle around blue buttons and hard drives full of granular health data. As someone who believes that health data liberacion is the right direction for healthcare, this is a great event and this year it seems to have really hit its stride.

One of the biggest advocates of using healthcare data for good is ONC’s own Farzad Mostashari. Never someone afraid to tweet or Retweet health data related topics, Farzad’s twitter account has been incredibly active during Health Datapalooza. So, I thought I’d use it to illustrate some of the messages Farzad found important enough to share from the event. Plus, I’ll throw in my commentary after each tweet as appropriate. (Note: when the tweet is from someone else it’s because Farzad retweeted it.)


If you want to stop reading here you could, because it’s the core of Farzad’s message. Although, if you want to go into depth on the topic, keep reading. At least Farzad has made clear that he’s going to use whatever methods he has available to make patients’ health data available.


I’ve said this a few times recently as well. I have an extreme belief in the creativity and drive of entrepreneurs. We just need more of them to be able to do their work in healthcare.


Amen! The challenge is getting this message to consumers. If you tell them that their data will be kept private, but will be shared where appropriate to provide better care, every patient wants this to happen. In fact, most already assume this is what’s happening.


Healthcare problems are still a HUGE challenge. We don’t need any more barriers than we already have to overcome.


I wish the $36 billion in EHR incentive money would have been spent on standardization. We’d have had better results. I’m still not sure how we’re going to get to future payment models. Govt could play a role in it.


Speaking of changing payment models. Seems like government doesn’t know how to get their either. A fundamental delivery system transformation could be translated as impossible.


The ladies will love Farzad in his bowtie. I love people who aren’t afraid of trying what seems impossible. Who in health IT is doing that today? I guess looking at the last tweet CMS and ONC are trying.


I’m not sure if we should be proud or sad at the 8% number. Granted, it’s a lot of people that have to learn about it. Although, since many don’t care about their health data, 8% is pretty good.


I’ll be interested to see this number post-meaningful use stage 2. Doctors will be really encouraging their patients to get their health data so they can meet MU stage 2.


This isn’t actually from Health Datapalooza, but Farzad did just retweet it. I haven’t dug into Obama’s plan to deal with patent trolls, but I’m really glad more of a spotlight is being put on this challenging problem. In the case of software, I’m really against patents because as the tweet says they do stifle innovation. It’s ironic because they’re suppose to encourage innovation, but it’s just not the reality of how they’re being used.