"healthcare" entries

Open health data in practice: Increase your access to lab results

Voice your support for a proposed federal rule that expands patients' access to test results.

I’m convinced that there’s a wave of innovation coming in healthcare, driven by new kinds of data, new ways of extracting meaning from that data, and new business models that data can enable.  That’s one of the reasons why we launched our StrataRx Conference, which focuses on the importance of data science to the future of health care.

Unfortunately, much of the data that will enable an entrepreneurial explosion is still locked up — in paper records, in proprietary data formats, and by well-intentioned but conflicting privacy regulations.

We’re making progress towards open data in healthcare, but there are still so many obstacles!  Ann Waldo recently introduced me to one of these.

A 2009 law modernized patient access rights by allowing individuals to get copies of their medical records in electronic format. Unfortunately, however, these patients’ access rights surprisingly do not include lab test results – one of the types of medical records that people are most likely to find urgent and useful. Due to the interaction of HIPAA (the Federal medical privacy law), CLIA (a Federal laboratory regulatory law), and state laws, patients can only get direct access to their their test results from labs in a handful of states.

A recent New York Times story highlighted just how much pain and suffering can be caused by this inability to get access to your own lab results.

In 2011, the Department of Health and Human Services put forward a proposed Rule that would give patients the right to get their test results directly from laboratories. This Rule is still waiting to be finalized. In hopes of breaking the logjam, O’Reilly Media and a variety of other players have written a consensus letter that voices our whole-hearted support for that proposed Rule and encourages the Federal government to finalize it promptly.

We’d love to invite you to join us in signing this letter.

Patients’ rights should include direct access to their lab results, just like all their other medical records!

Comments: 4

Investigating the industrial Internet

We're working with GE to explore the coming internet of very big things.

Consumer networks have revolutionized the way companies understand and reach their customers, making possible intricate measurement and accurate prediction at every step of every transaction. The same revolution is underway in our infrastructure, where new generations of sensor-laden power plants, cars and medical devices will generate vast quantities of data that could bring about improvements in quality, reliability and cost. Big machines will enter the modern era of big data, where they’ll be subject to constant analysis and optimization.

We’ve teamed up with General Electric to explore the industrial Internet and convene a series of conversations that we hope will accelerate its development. GE’s strong presence in many industries has given it a great deal of insight into the ways that industrial data might be gathered, distributed and linked together.

Linking together big smart devices into a true industrial Internet presents enormous challenges: standards need to be developed with the full engagement of the technology industry. Software innovators will need to develop tools that can handle vast quantities of sensor data under tight security constraints, sharing information that can improve the performance of systems that have many operators — without leaking anything important to malicious groups.

Launching the industrial Internet will require big investment on the part of those who will operate each of its nodes, so in addition to looking at the concept’s technical aspects we’ll also explore its promise as a business revolution in ways that are both practical and already in use (like remote operation of mining equipment) and promising but largely conceptual (like mobile health and big data in diagnostics).

GE won’t be the only voice in this conversation: other companies have developed their own visions for the industrial Internet and we’ll be exploring those as well, looking for commonalities and engaging as many voices as we can from our neutral place in the technology industry.

The promise of the industrial Internet is that it will bring intelligence to industries that are hugely capital-intensive and create broad value that all of the industrial Internet’s participants will share. We’ll look for stories that illustrate that future.

Comments: 2
Four short links: 1 August 2012

Four short links: 1 August 2012

Chinese Hackers, Edible Sensors, Quantum Physics

  1. China Hackers Hit EU Point Man and DC (Bloomberg) — wow. The extent to which EU and US government and business computer systems have been penetrated is astonishing. Stolen information is flowing out of the networks of law firms, investment banks, oil companies, drug makers, and high technology manufacturers in such significant quantities that intelligence officials now say it could cause long-term harm to U.S. and European economies. (via Gady Epstein)
  2. Digestible Microchips (Nature) — The sand-particle sized sensor consists of a minute silicon chip containing trace amounts of magnesium and copper. When swallowed, it generates a slight voltage in response to digestive juices, which conveys a signal to the surface of a person’s skin where a patch then relays the information to a mobile phone belonging to a healthcare-provider. (via Sara Winge)
  3. Quantum Mechanics Make Simple(r) — clever way to avoid the brain pain of quantum mechanics and leap straight to the “oh!”. [N]ature is described not by probabilities (which are always nonnegative), but by numbers called amplitudes that can be positive, negative, or even complex. […] In the usual “hierarchy of sciences”—with biology at the top, then chemistry, then physics, then math—quantum mechanics sits at a level between math and physics that I don’t know a good name for. Basically, quantum mechanics is the operating system that other physical theories run on as application software (with the exception of general relativity, which hasn’t yet been successfully ported to this particular OS). (via Hacker News)
  4. Selectively De-Animating Video — SIGGRAPH talk showing how to keep some things still in a video. Check out the teaser video with samples: ZOMG. I note that Maneesh Agrawala was involved: I’m a fan of his from Line Drive maps and 3D exploded views, but his entire paper list is worth reading. Wow. (via Greg Borenstein)
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Four short links: 9 July 2012

Four short links: 9 July 2012

Personalized Medicine, Reporting on Execution, Software-Defined Radio, and Beyond Hadoop

  1. Personalized Leukemia Treatment (NY Times) — sequenced the tumor’s DNA, found the misbehaving gene, realized there was an existing experimental treatment to tackle that gene, and it worked. Reminds me of My Daughter’s DNA, which had its origin in the poignant story of Hugh Reinhoff sequencing his daughter’s DNA to diagnose her condition. It’s all about medical professionals now, but that’s no different from the Internet starting with geeks and moving out to the masses.
  2. Bullseye HD — web app which allows you to make the most of the time you spend with your team, by focusing your attention on the projects and actions that are off-track or not getting enough focus, rather than wasting precious time on status updates. (via Rowan Simpson)
  3. Per Vices — selling software-defined radio boards (for Linux only at the moment). (via Ars Technica)
  4. Post-Hadoop (GigaOm) — Google have moved beyond the basic software that Hadoop was copying. Lots of interesting points in this article, including one fundamental reality – MapReduce (and thereby Hadoop) is purpose-built for organized data processing (jobs). It is baked from the core for workflows, not ad hoc exploration.
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Four short links: 25 June 2012

Four short links: 25 June 2012

Public Spending Links, Telemedicine Questioned, Comments Re-examined, and Informed Consent

  1. Stop Treating People Like Idiots (Tom Steinberg) — governments miss the easy opportunities to link the tradeoffs they make to the point where the impacts are felt. My argument is this: key compromises or decisions should be linked to from the points where people obtain a service, or at the points where they learn about one. If my bins are only collected once a fortnight, the reason why should be one click away from the page that describes the collection times.
  2. UK Study Finds Mixed Telemedicine BenefitsThe results, in a paper to the British Medical Journal published today, found telehealth can help patients with long-term conditions avoid emergency hospital care, and also reduce deaths. However, the estimated scale of hospital cost savings is modest and may not be sufficient to offset the cost of the technology, the report finds. Overall the evidence does not warrant full scale roll-out but more careful exploration, it says. (via Mike Pearson)
  3. Pay Attention to What Nick Denton is Doing With Comments (Nieman Lab) — Most news sites have come to treat comments as little more than a necessary evil, a kind of padded room where the third estate can vent, largely at will, and tolerated mainly as a way of generating pageviews. This exhausted consensus makes what Gawker is doing so important. Nick Denton, Gawker’s founder and publisher, Thomas Plunkett, head of technology, and the technical staff have re-designed Gawker to serve the people reading the comments, rather than the people writing them.
  4. Informed Consent Source of Confusion (Nature) — fascinating look at the downstream uses of collected bio data and the difficulty in gaining informed consent: what you might learn about yourself (do I want to know I have an 8.3% greater chance of developing Alzheimers? What would I do with that knowledge besides worry?), what others might learn about you (will my records be subpoenable?), and what others might make from the knowledge (will my data be used for someone else’s financial benefit?). (via Ed Yong)
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Four short links: 11 June 2012

Four short links: 11 June 2012

Open Source Implants, Gut Fungus, Closed Source Damage, and Microtask Framework

  1. When Code Can Kill or Cure (The Economist) — I’ve linked to the dangers of closed source devices before, but this caught my eye: “In the 1990s we developed an excellent radiation-therapy treatment-planning system and tried to give it away to other clinics,” says Dr Mackie. “But when we were told by the FDA that we should get our software approved, the hospital wasn’t willing to fund it.” He formed a spin-off firm specifically to get FDA approval. It took four years and cost millions of dollars. The software was subsequently sold as a traditional, closed-source product.
  2. Gut Fungus (Wired) — the microbiome of bacteria in your body is being studied, but now researchers have scoured the poop of different species and found different mycological populations in each, and linked them to diseases.
  3. Evaluating the Harm from Closed Source (Eric Raymond) — whether or not you argue with his ethics, you will appreciate the clear description of the things you’re trading off when you choose to use closed source software.
  4. PyBossaa free, open-source, platform for creating and running crowd-sourcing applications that utilise online assistance in performing tasks that require human cognition, knowledge or intelligence such as image classification, transcription, geocoding and more! (via The Open Knowledge Foundation)
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What do mHealth, eHealth and behavioral science mean for the future of healthcare?

Dr. Audie Atienza focuses on the intersection of behavioral science, data and healthcare apps.

We're just at the beginning of discovering how to best develop and utilize mobile technology to improve the health of individuals and the public, says Dr. Audie Atienza.

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Four short links: 27 March 2012

Four short links: 27 March 2012

Healthcare Ain't Silicon Valley, Math for Makers, Open Source Musician Tools, and Learn to Make Languages

  1. Five Tough Lessons I Had To Learn About Healthcare (Andy Oram) — I don’t normally link to things from Radar but this gels 110% with my limited experience with the healthcare industry.
  2. Makematics: Math for MakersI want the hardware hackers who are building the next generation of DIY 3D printers to be able to turn topological algorithms and concepts into open source tool path generation software that creates more efficient gcode and enables the fabrication of previously impossible physical forms. I don’t know the best way to go about this, but this site is intended to act as home for my experiments.
  3. CASH Music — they build open source tools for musicians and labels to make money. What WordPress did for bloggers, we’re doing for musicians. (via New York Times)
  4. PL101: Create Your Own Programming Language — you’ll build it in Javascript as you learn how programming languages and compilers work. It’ll run on AppEngine and be hosted on GitHub.
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Four short links: 19 March 2012

Four short links: 19 March 2012

The Quantified Professor, Bus Monitor, Arduino Confessor, and Ethics of Deceit

  1. Examining His Own Body (Science Now) — Stanford prof. has sequenced his DNA and is now getting massively Quantified Self on his metabolism, infections, etc. This caught my eye: George Church, who has pioneered DNA sequencing technology and runs the Personal Genome Project* at Harvard Medical School in Boston that enrolls people willing to share genomic and medical information similar to what’s presented in the Cell report, says some might critique Snyder’s self-exam as merely anecdotal. “But one response is that it is the perfect counterpoint to correlative studies which lump together thousands of cases versus controls with relatively much less attention to individual idiosyncrasies,” Church says. “I think that N=1 causal analyses will be increasingly important.”
  2. Bus Arrival Monitor (John Graham-Cumming) — hacked a toy doubledecker bus with LED display feeding bus arrival info from the Transport for London API via a modded Linksys WRT router.
  3. Arduino Tool That Connects Each Board to Its Own Source (Ideo) — If you create something with Arduino and put it out into the world, there is no well-established link to the source. If you personally made the device, the source can get lost over time. If you didn’t create it, you could have a tough time tracking the source down. You have the physical device, why can’t it tell you where it’s code lives? I made a tool for Arduino called “Upload-And-Retrieve-Source” that for the most part solves this problem. (via Chris Spurgeon)
  4. Mike Daisey is a Liar and So Am I — I linked to the original This American Life story, so now I’m linking to the best commentary on their retraction of the story. This is an excellent piece on the ubiquity and ethics of Daiseyesque means-justifies-the-end for-a-good-cause deceit.
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Big data is the next big thing in health IT

Big data introduces unique healthcare challenges and opportunities.

The proliferation of digital health information, including both clinical and claims information, is creating large datasets and significant opportunity.

Comments: 2