Data that matters to patients
This article is by guest author Amik Ahmad. He is speaking on this topic at Strata Rx.
Distractions didn’t have a chance. My phone was devoid of reception. The New York Times mobile application searched impossibly for a Wi-Fi connection. Conditions perfect for focus: away from a world always on and connected, noisy, and belligerent with information overload. I could have found joy in a single byte. But instead, I was pushed to the limit of sensory deprivation, and I teetered on the edge of insanity. I spent nine hours of my life in a hospital waiting room.
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.
A tool for outreach to patients produces unexpected benefits
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.
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.
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.