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.
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.
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.
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.
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.
We need to provide data to patients in a form they can understand
Would you take a morning off from work to discuss health care costs and consumer empowerment in health care? Over a hundred people in the Boston area did so on Monday, May 6, for the conference “Empowering Healthcare Consumers: A Community Conversation Conference” at the Suffolk Law School. This fast-paced and wide-ranging conference lasted just long enough to show that hopes of empowering patients and cutting health care costs (which is the real agenda behind most of the conference organizers) run up against formidable hurdles–many involving the provision of data to these consumers.
Fit2Cure taps the public's visual skills to match compounds to targets
In the inspiring tradition of Foldit, the game for determining protein shapes, Fit2Cure crowdsources the problem of finding drugs that can cure the many under-researched diseases of developing countries. Fit2Cure appeals to the player’s visual–even physical–sense of the world, and requires much less background knowledge than Foldit.
There about 7,000 rare diseases, fewer than 5% of which have cures. The number of people currently engaged in making drug discoveries is by no means adequate to study all these diseases. A recent gift to Harvard shows the importance that medical researchers attach to filling the gap. As an alternative approach, abstracting the drug discovery process into a game could empower thousands, if not millions, of people to contribute to this process and make discoveries in diseases that get little attention to scientists or pharmaceutical companies.
The biological concept behind Fit2Cure is that medicines have specific shapes that fit into the proteins of the victim’s biological structures like jig-saw puzzle pieces (but more rounded). Many cures require finding a drug that has the same jig-saw shape and can fit into the target protein molecule, thus preventing it from functioning normally.
Signs of the field's potential along with self-imposed limits
I spent most of the past week on my annual assessment of the progress that the field of health information technology is making toward culling the benefits offered by computers and Internet connectivity: instant access to data anywhere; a leveling of access for different patient populations and for health care providers big and small; the use of analytics to direct resources and attack problems better.
The big HIMSS conference in New Orleans, a crossroads for doctors, technologists, and policy-makers, provided a one-stop check-in. I already covered several aspects of the conference in two earlier postings, Singin’ the Blues: visions deferred at HIMSS health IT conference and Slow & Steady: looking toward a better health IT future at HIMSS. Here I’ll summarize a couple more trends in data exchange and basic functions of health IT systems.
Participatory medicine and hospital technologies take steps forward
After my funereal disparagement yesterday of the opening of the HIMSS health care conference in New Orleans, I decided to pick up the beat today and talk about some of the people and ideas I encountered with promise for the future.
Nobody Knows The Way I Feel This Morning: patient engagement and all that jazz
Yesterday I spoke of the gap between the reform-minded leaders of health care and the institutions that mostly take care of us. The latest battleground between these peaks of care is the movement variously called patient engagement, patient empowerment, and participatory medicine.
There’s nothing new about this concept. Desperate patients have been self-educating, negotiating with health care systems, and creating advocacy groups forever. On the self-help front, Prevention Magazine began (according to Wikipedia) in 1950. The Society for Participatory Medicine was founded in the mid 2000’s, around the time e-Patient Dave made the concept into a meme through his brave online sharing of his care.
HIMSS has thrown its support behind the Society for Participatory Medicine, which had a lunchtime meeting at the conference yesterday to discuss increasing membership and grass-roots promotional activities. (Folks, consider yourselves promoted.) HIMSS also invited teh popular author Eric Topol to deliver yesterday’s keynote. And the first statement offered by Topol was praise for Regina Holliday, a consumately self-educated patient advocate and creator of the famous artwork and painted jackets in the Walking Gallery. Read more…