ENTRIES TAGGED "health"

Change is hard. Adherence is harder.

How do we motivate sustained behavior change when the external motivation disappears—like it's supposed to?

If you’ve ever tried to count calories, go on a diet, start a new exercise program, change your sleep patterns, spend less time sitting, or make any other type of positive health change, then you know how difficult it is to form new habits. New habits usually require a bit of willpower to get going, and we all know that that’s a scarce resource. (Or at least, a limited one.)

Change is hard. But the real challenge comes after you’ve got a new routine going—because now you’ve got to keep it going, even though your original motivations to change may no longer apply. Why keep dieting when you no longer need to lose weight? We’ve all had the idea at some point that we really should reward ourselves for that five-pound weight loss with a cupcake, right?

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A Patient a Day Keeps the Doctor in Play

By Julie Yoo, Chief Product Officer at Kyruus

Once upon a time, a world-renowned surgeon, Dr. Michael DeBakey, was summoned by the President when the Shah of Iran, a figure of political and strategic importance, fell ill with an enlarged spleen due to cancer. Dr. DeBakey was whisked away to Egypt to meet the Shah, made a swift diagnosis, and recommended an immediate operation to remove the spleen. The surgery lasted 80 minutes; the spleen, which had grown to 10 times its normal size, was removed, and the Shah made a positive recovery in the days following the surgery – that is, until he took a turn for the worse, and ultimately died from surgical complications a few weeks later. [1]

Sounds like a routine surgery gone awry, yes? But consider this: Dr. DeBakey was a cardiovascular surgeon – in other words, a surgeon whose area of specialization was in the operation of the heart and blood vessels, not the spleen. He was most well-known for his open heart bypass surgery techniques, and the vast majority of his peer-reviewed articles relate to cardiology-related operating techniques. High profile or not, why was a cardiovascular surgeon selected to perform an abdominal surgery?

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Four short links: 24 September 2013

Four short links: 24 September 2013

Camera Heart Rate, Low Power Location, Quantified Self Radio, and a Multi Sensor

  1. Measuring Heart Rate with a Smartphone Camera — not yet realtime, but promising sensor development.
  2. iBeaconslow-power, short-distance location monitoring beacons. Any iOS device that supports Bluetooth Low Energy can become an iBeacon, and can detect other iBeacons when they are nearby. Apps can be notified when iBeacons move in and out of range of the device, and can monitor the proximity of iBeacons as their proximity changes over time.
  3. Analysis: The Quantified Self (BBC) — radio show on QS. Good introduction for the novice.
  4. Tinke — heart rate, blood oxygen, respiration rate, and heart rate variability in a single small sensor that plugs into your iOS device.
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Big Data and Health Care

An Interview with Julie Steele

A week or two ago, I got to correspond with Danielle Brooks of Disruptive Women in Health Care about the work I do here at O’Reilly. The following interview is reprinted here with their kind permission.

Tell us about your work. What drew you to the area?

I have mostly worked as a book editor, until just a year or two ago. I was working on books about databases, machine learning, visualization, and other relevant topics when O’Reilly launched its Strata conference on data science, and so I became involved in that conference. But as Strata took off, it became apparent to us that certain communities — and certain types of data — were special. Health care is one of those areas: the insights that data analysis can give us about ourselves and the things that ail us are enormous, but the risks of over-sharing and the resulting constraints such as HIPAA also present very real challenges.

In 2012, O’Reilly decided to launch a new edition of its data science conference to focus on health care, and that’s how Strata Rx was born. I was asked to become its Program Chair, along with Colin Hill, CEO of GNS Health care, and so I have spent that last 18 months learning everything I can about the (very complicated!) health care industry. Colin and I are great partners because of the complimentary backgrounds we bring together — Colin from the health care industry side and myself from the technology side. Ultimately, that’s what Strata Rx aims to do, too: we hope that by bringing together professionals from all parts of the industry (payers, providers, researchers, analysts, advocates, developers, investors, and caregivers, just to name a few) we can begin to solve some of the large and complex problems facing us in this area.

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Do we have to worry about re-identification attacks upon our health data?

Exploring an upcoming Strata Rx 2013 session on big data and privacy

Databases of health data are widely shared among researchers and for commercial purposes, and they are even put online in order to promote health research and data-driven health app development, so preserving the privacy of patients is critical. But are these data sets de-identified properly? If not, it could be re-identified. Just look at the two high profile re-identification attacks that have been publicized in recent months.

The first attack involved individuals who voluntarily published their genomic data online as a way to support open data for research. Besides their genomic data, they posted their basic demographics such as date of birth and zip code. The demographic data, not their genomic data, was used to re-identify a subset of the individuals.

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Data sharing drives diagnoses and cures, if we can get there (part 2)

How the field of genetics is using data within research and to evaluate researchers

Editor’s note: Earlier this week, Part 1 of this article described Sage Bionetworks, a recent Congress they held, and their way of promoting data sharing through a challenge.

Data sharing is not an unfamiliar practice in genetics. Plenty of cell lines and other data stores are publicly available from such places as the TCGA data set from the National Cancer Institute, Gene Expression Omnibus (GEO), and Array Expression (all of which can be accessed through Synapse). So to some extent the current revolution in sharing lies not in the data itself but in critical related areas.

First, many of the data sets are weakened by metadata problems. A Sage programmer told me that the famous TCGA set is enormous but poorly curated. For instance, different data sets in TCGA may refer to the same drug by different names, generic versus brand name. Provenance–a clear description of how the data was collected and prepared for use–is also weak in TCGA.

In contrast, GEO records tend to contain good provenance information (see an example), but only as free-form text, which presents the same barriers to searching and aggregation as free-form text in medical records. Synapse is developing a structured format for presenting provenance based on the W3C’s PROV standard. One researcher told me this was the most promising contribution of Synapse toward the shared used of genetic information.

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Data sharing drives diagnoses and cures, if we can get there (part 1)

Observations from Sage Congress and collaboration through its challenge

The glowing reports we read of biotech advances almost cause one’s brain to ache. They leave us thinking that medical researchers must command the latest in all technological tools. But the engines of genetic and pharmaceutical innovation are stuttering for lack of one key fuel: data. Here they are left with the equivalent of trying to build skyscrapers with lathes and screwdrivers.

Sage Congress, held this past week in San Francisco, investigated the multiple facets of data in these field: gene sequences, models for finding pathways, patient behavior and symptoms (known as phenotypic data), and code to process all these inputs. A survey of efforts by the organizers, Sage Bionetworks, and other innovations in genetic data handling can show how genetics resembles and differs from other disciplines.

An intense lesson in code sharing

At last year’s Congress, Sage announced a challenge, together with the DREAM project, intended to galvanize researchers in genetics while showing off the growing capabilities of Sage’s Synapse platform. Synapse ties together a number of data sets in genetics and provides tools for researchers to upload new data, while searching other researchers’ data sets. Its challenge highlighted the industry’s need for better data sharing, and some ways to get there.

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A Day at the 2013 Genomes, Environments and Traits Conference

In which the question of whether research subjects have any rights to their data is pondered.

The GET (Genomes, Environments and Traits) conference is a confluence of parties interested in the advances being made in human genomes, the measurement of how the environment impacts individuals, and how the two come together to produce traits.  Sponsored by the organizers of the Personal Genome Project (PGP) at Harvard, it is a two-day event whose topics range from the appropriate amount of access that patients should have to their genetics data to the ways that Hollywood can be convinced to portray genomics more accurately.

It also is a yearly meeting place for the participants in the Personal Genome Project (one of whom is your humble narrator), people who have agreed to participate in an “open consent” research model.  Among other things, this means that PGP participants agree to let their cell lines be used for any purposes (research or commercial).  They also acknowledge ahead of time that because their genomes and phenotypic traits are being released publicly, there is a high likelihood that interested parties may be able to identify them from their data.  The long term goal of the PGP is to enroll 100,000 participants and perform whole genome sequencing of their DNA, they currently have nearly 2,300 enrolled participants and have sequenced around 165 genomes.

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Data science in the natural sciences

Big data is shaping diverse fields, showing that past predictions from data-driven natural sciences are now coming to pass.

I find myself having conversations recently with people from increasingly diverse fields, both at Columbia and in local startups, about how their work is becoming “data-informed” or “data-driven,” and about the challenges posed by applied computational statistics or big data.

A view from health and biology in the 1990s

In discussions with, as examples, New York City journalists, physicists, or even former students now working in advertising or social media analytics, I’ve been struck by how many of the technical challenges and lessons learned are reminiscent of those faced in the health and biology communities over the last 15 years, when these fields experienced their own data-driven revolutions and wrestled with many of the problems now faced by people in other fields of research or industry.

It was around then, as I was working on my PhD thesis, that sequencing technologies became sufficient to reveal the entire genomes of simple organisms and, not long thereafter, the first draft of the human genome. This advance in sequencing technologies made possible the “high throughput” quantification of, for example,

  • the dynamic activity of all the genes in an organism; or
  • the set of all protein-protein interactions in an organism; or even
  • statistical comparative genomics revealing how small differences in genotype correlate with disease or other phenotypes.

These advances required formation of multidisciplinary collaborations, multi-departmental initiatives, advances in technologies for dealing with massive datasets, and advances in statistical and mathematical methods for making sense of copious natural data. Read more…

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Hawaii and health care: A small state takes a giant step forward

Hawaii's new law cuts through health care complexity. It's a move that should be lauded and copied.

Knots by Uncle Catherine, on FlickrIn an era characterized by political polarization and legislative stalemate, the tiny state of Hawaii has just demonstrated extraordinary leadership. The rest of the country should now recognize, applaud, and most of all, learn from Hawaii’s accomplishment.

Hawaii enacted a new law that harmonizes its state medical privacy laws with HIPAA, the federal medical privacy law. Hawaii’s legislators and governor, along with an impressive array of patient groups, health care providers, insurance companies, and health information technologists, agreed that having dozens of unique Hawaii medical privacy laws in addition to HIPAA was confusing, expensive, and bad for patients. HB 1957 thus eliminates the need for entities covered by HIPAA to also comply with Hawaii’s complex array of medical privacy laws.

How did this thicket of state medical privacy laws arise?

Hawaii’s knotty web of state medical privacy laws is not unique. There are vast numbers of state health privacy laws across the country — certainly many hundreds, likely thousands. Hawaii alone has more than 50. Most were enacted before HIPAA, which helps explain why there are so many; when no federal guarantee of health privacy existed, states took action to protect their constituents from improper invasions of their medical privacy. These laws grew helter-skelter over decades. For example, particularly restrictive laws were enacted after inappropriate and traumatizing disclosures of HIV status during the 1980s.

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