Andy Oram

Andy Oram is an editor at O'Reilly Media. An employee of the company since 1992, Andy currently specializes in open source technologies and software engineering. His work for O'Reilly includes the first books ever released by a U.S. publisher on Linux, the 2001 title Peer-to-Peer, and the 2007 best-seller Beautiful Code.

Combining personal data with ratings for targeted medical information

HealthTap refines the answers returned to specific health queries

HealthTap is a community of doctors and clients seeking answers to health questions. Its central service provides immediate access to doctors and their knowledge either by doctors answering client questions in real time, or through a large database of previously answered questions and answers from doctors that are peer reviewed and tagged with recommendations by other doctors. By combining the doctors’ recommendations with data provided by each client on himself or herself, HealthTap provides customized results to queries. In this video, HealthTap CEO Ron Gutman explains unexpected lessons they’ve learned from offering the intelligent search service.

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Ginger.io: Putting the Patient-Provider connection at the center

A tool for outreach to patients produces unexpected benefits

This posting was written by guest author Julia Bernstein of Ginger.io. Ginger.io’s CEO Anmol Madan will be speaking on this topic at Strata Rx.

The traditional, office-based model for health care is episodic. The provider-patient relationship exists almost completely within the walls of the exam room, with little or no follow-up between visits. Data is primarily episodic as well, based on blood pressure reading done at a specific time or surveys administered there and then, with little collected out of the office. And even the existing data collection tools—paper diaries or clunky meters—are focused more on storing data that on connecting the patient and provider through that data in real time.

There is no way to get in touch when, for instance, a patient’s blood sugar starts varying wildly or pain levels change. The provider often depends on the patient reaching out to them. And even when a provider does put into place an outreach protocol, it is usually very crude, based on a general approach to managing a population as opposed to an understanding of a patient. The end result is a system that, while doing its best within a difficult setting, is by default reactive instead of proactive.

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Clinical discovery in the age of “Big Data”

Modern data processing tools, many of them open source, allow more clinical studies at lower costs

This guest posting was written by Yadid Ayzenberg (@YadidAyzenberg on Twitter). Yadid is a PhD student in the Affective Computing Group at the MIT Media Lab. He has designed and implemented cloud platforms for the aggregation, processing and visualization of bio-physiological sensor data. Yadid will speak on this topic at the Strata Rx conference.

A few weeks ago, I learned that the Framingham Heart Study would lose $4 million (a full 40 percent of its funding) from the federal government due to automatic spending cuts. This seminal study, begun in 1948, set out to identify the contributing factors to Cardiovascular Disease (CVD) by following a group of 5,209 men and woman and tracking their life style habits, performing regular physical examinations and lab tests. This study was responsible for finding the major risk factors for CVD, such as high blood pressure and lack of exercise. The costs associated with such large-scale clinical studies are prohibitive, making them accessible only to organizations with sufficient financial resources or through government funding.
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One-click analysis: Detecting and visualizing insights automatically

Arijit Sengupta of BeyondCore uncovers hidden relationships in public health data

The importance of visualizing data is universally recognized. But, usually the data is passive input to some visualization tool and the users have to specify the precise graph they want to visualize. BeyondCore simplifies this process by automatically evaluating millions of variable combinations to determine which graphs are the most interesting, and then highlights these to users. In essence, BeyondCore automatically tells us the right questions to ask of our data.

In this video, Arijit Sengupta, CEO of BeyondCore, describes how public health data can be analyzed in real-time to discover anomalies and other intriguing relationships, making them readily accessible even to viewers without a statistical background. Arijit will be speaking at Strata Rx 2013 with Tim Darling of Objective Health, a McKinsey Solution for Healthcare Providers, on the topic of this post.

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Open Source convention considers situational awareness in cars, and more

A report from OSCon

Every conference draws people in order to make contacts, but the Open Source convention also inspires them with content. I had one friend withdraw from an important business meeting (sending an associate) in order to attend a tutorial.

Lots of sessions and tutorials had to turn away attendees. This was largely fall-out from the awkward distribution of seats in the Oregon Convention Center: there are just half a dozen ballroom-sized spaces, forcing the remaining sessions into smaller rooms that are more appropriate for casual meetings of a few dozen people. When the conference organizers measure the popularity of the sessions, I suggest that any session at or near capacity have its attendance counted as infinity.

More than 3,900 people registered for OSCon 2013, and a large contingent kept attending sessions all the way through Friday.

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Community Leadership Summit tracks the forces that spread ideas

Inclusivity and recruitment among the themes at the unconference

American businesses, along with many others around the world, hustle to find enough programmers and computing staff. The gap widens precariously between the number of job openings and the number students graduating with the necessary skills. And yet, at the same time, we seem to drown in an overabundance of software packages. If you want JavaScript frameworks, large-scale data stores, bulk system configuration tools, mesh networking protocols, or even a new functional language, you have almost too many choices. So the shortage of programmers does not apply when people offer their code to their colleagues across the globe.

Open source software’s ever-expanding options show a programming culture that is proud of its accomplishments and eager to explore untapped potential. But above all, they reveal a desire to work together on problems. The existence of open source packages shows the strength of community.

The Community Leadership Summit (CLS), which started four years ago at the Open Source convention and has been held on the weekend preceding it ever since, drew more attendees than ever this year (I estimate some 200 at the opening plenary), and a large fraction of them actually work as community managers. The field has matured in other ways as well. At early conferences, people expressed aspirations and complained of problems that this year are finding solutions.

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Donald Berwick discusses health care improvement: goals, exemplary organizations,and being at a turning point

A video interview with entrepreneur Colin Hill

Last week, a wide-ranging interview on data in health care took place between Dr. Donald Berwick and Colin Hill of GNS Healthcare. Dr. Berwick and Hill got together in the Cambridge, Mass. office of the Institute for Healthcare Improvement, a health care reform organization founded by Dr. Berwick, to discuss data issues related to O’Reilly’s upcoming Strata Rx conference.

Berwick returned to IHI after his year as administrator of Centers for Medicare & Medicaid Services. Throughout these changes he has maintained his stalwart advocacy for better patient care, a campaign that has always been based on a society’s and a profession’s moral responsibility. Even an IHI course for the “Patient Safety Executive” program puts “Building a just culture” on its agenda.

Among the topics Berwick and and Hill look at in these videos are the importance of transparency or “turning on the lights,” ways of learning from the health provider system itself as well as from clinical trials, types of personalized medicine, the impediments to collecting useful data that can improve care, exemplary organizations that deliver better healthcare, and how long change will take.

The full video appears below.

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Open source software creeps in to health care through clinical research

Report from OpenClinica conference

Although open source has not conquered the lucrative market for electronic health records (EHRs) used by hospital systems and increasingly by doctors, it is making strides in many other important areas of health care. One example is clinical research, as evidenced by OpenClinica in field of Electronic Data Capture (EDC) and LabKey for data integration. Last week I attended a conference for people who use OpenClinica in their research or want to make their software work with it.

At any one time, hundreds of thousands of clinical trials are going on around the world, many listed on an FDA site. Many are low-budget and would be reduced to using Excel spreadsheets to store data if they didn’t have the Community edition of OpenClinica. Like most companies with open-source products, OpenClinica uses the “open core” model of an open Community edition and proprietary enhancements in an Enterprise edition. There are about 1200 OpenClinica installations around the world, although estimation is always hard to do with open source projects.

What is Electronic Data Capture? As the technologically archaic name indicates, the concept goes back to the 1970s and refers simply to the storage of data about patients and their clinical trials in a database. It has traditionally been useful for reporting results to funders, audit trails, printing in various formats, and similar tasks in data tracking.

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Ways to put the patient first when collecting health data

Report from 2013 Health Privacy Summit

The timing was superb for last week’s Health Privacy Summit, held on June 5 and 6 in Washington, DC. First, it immediately followed the 2000-strong Health Data Forum (Health Datapalooza), where concern for patients rights came up repeatedly. Secondly, scandals about US government spying were breaking out and providing a good backdrop for talking about protection our most sensitive personal information–our health data.

The health privacy summit, now in its third year, provides a crucial spotlight on the worries patients and their doctors have about their data. Did you know that two out of three doctors (and probably more–this statistic cites just the ones who admit to it on a survey) have left data out of a patient’s record upon the patient’s request? I have found that the summit reveals the most sophisticated and realistic assessment of data protection in health care available, which is why I look forward to it each year. (I’m also on the planning committee for the summit.) For instance, it took a harder look than most observers at how health care would be affected by patient access to data, and the practice of sharing selected subsets of data, called segmentation.

What effect would patient access have?

An odd perceptual discontinuity exists around patient access to health records. If you go to your doctor and ask to see your records, chances are you will be turned down outright or forced to go through expensive and frustrating magical passes. One wouldn’t know that HIPAA explicitly required doctors long ago to give patients their data, or that the most recent meaningful use rules from the Department of Health and Human Services require doctors to let patients view, download, and transmit their information within four business days of its addition to the record.

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Patients matter most, but technology matters a lot

Report from the Health Data Forum

Computing practices that used to be religated to experimental outposts are now taking up residence at the center of the health care field. From natural language processing to machine learning to predictive modeling, you see people promising at the health data forum (Health Datapalooza IV) to do it in production environments.

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