ENTRIES TAGGED "medical"
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.
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…
The main concerns of health reformers don't rise to the top of health provider agendas
HIMSS, the leading health IT conference in the US, drew over 32,000 people to New Orleans this year (with another thousand or two expected to register by the end of the conference). High as this turn-out sounds, it represents a drop from last year, which exceeded 37,000.
Maybe HIMSS could do even better by adding a “Clueless” or “I don’t believe in health IT” track. Talking to the people who promote health IT issues to the doctors and their managers, I sense a gap–and to some extent, a spectrum of belief–in the recognition of the value of gathering and analyzing data about health care.
I do believe that American health care providers have evolved to accept computerization, if only in response to the HITECH act (passed with bipartisan Congressional support) and the law’s requirements for Meaningful Use of eleectronic records. Privately, many providers may still feel that electronic health records are a bad dream that will go away. This article presents a radically different view. I think electronic health records are a bad dream that will go on for many years to come. I’ll expand on this angle when blogging from HIMSS this year.
Critical data on hypoglycemia not collected before
In a mobile, texting, socially engaged society, one would expect medical researchers to move beyond clipboards and phone surveys to make the most of technology. Harvard Medical School and Boston Children’s Hospital are starting to do that with a series of studies they’ve done querying people with diabetes, a growing population with multiple, severe health needs. Elissa Weitzman, an assistant professor at HMS and Children’s Hospital, discusses a recent study that she and her team published, using a social network called TuDiabetes, the open source patient data repository Indivo (developed at HMS), and an app they developed called TuAnalyze.
Android TV systems provide low-cost interactive care
Video systems can streamline hospital care in all sorts of ways from displaying messages (“Quiet time is 1 to 2 PM today”) to taking patient surveys, showing patients their X-Rays, and helping patients view their records from their beds. But most of these systems lie outside the budgets of small and rural hospitals. Healthcare Information is halving the costs of the systems, largely by deploying Android in their sets, and is selling them to smaller healthcare institutions that could not afford them before. The use of Android also permits hospitals to choose among the hundreds of thousands of standard apps available in App Stores.
Sequence of screens showing path through a patient survey