Month: April 2013

Open Research For Open Cures: A Report From Sage Congress

Apr 26, 2013• 4

By Andy Oram

Over four years of Congresses, Sage Bionetworks has drawn together leading thinkers and doers throughout the fields of genetic research and drug development. For two days each year, the conference floor is colonized by clumps of eagerly networking PhDs from academic, pharma, government, non-profits, biotech firms, and patient advocacy groups–people who often glide from one domain to another within this tight-knit cohort.

A cohort, certainly, we can characterize this group of attendees, sharing as they do a mysterious language drawn from years of research most of us will never understand. But is it a community? That will be tested over the following year as Sage Bionetworks lets go of the Congress. Founder Stephen Friend says it is up to others to create the next Congress, and its success or failure will be a measurement of the sweat and passion that Friend and Sage have put into attempts to build a community.

Why should a reader look further at this struggle among a tiny elite, rather than clicking on the next article? Well, first, if you’re one of the 48% of Americans who took a prescription drug this month, you should be concerned about where new breakthrough drugs will emerge. If you visit this web site because you want a more responsive health care system that can match patients to treatments more quickly and cheaply, recognize that new methods are important nowhere as much as at the foundation of the system where new treatments are discovered. And if you are just curious about the potential for global cross-institutional teams and loose networks connecting experts with ordinary members of the public to find creative solutions to old problems, this article will provide insights.

Don’t get too close, you don’t know what I have

The premise on which Friend founded Sage is that research and drug development have stagnated and cannot progress without more collaboration and data sharing. Therefore, with all due regard for the presentations at the recent Sage Congress on cancer research projects and other individual experiments, the real theme of the conference is in the keynotes about open source, the use of social media, and crowdsourcing. The challenge of this community–if we find that it has indeed become a community–is to analyze and deal with the particular challenges that genetic research and drug development inject into trends toward open collaboration.

Caregiving at a Crossroads: New Models, New Opportunities

Apr 26, 2013

By Ping Hao

Family Caregiver Alliance invites you to our 2nd Annual Leadership Think Tank Dinner, May 9th at 6pm in San Francisco.

Family caregivers are the fabric upon which the health care system relies. Not surprisingly, the business and non-profit communities are finding new opportunities through technology innovation and policy changes to address the growing burden of family caregiving.

Join industry leaders across both business and non-profit sectors to discuss how to come together to address create sustainable momentum.

What Does HIPAA Have to Do With Gun Control? Maybe More Than You Think.

Apr 25, 2013

By Adrianna McIntyre

There aren’t many who would quibble with an argument that those with severe mental illness—specifically, individuals “who have been involuntarily committed to a mental institution, found incompetent to stand trial or not guilty by reason of insanity. or otherwise have been [legally judged] to have a severe mental condition that results in the individuals presenting a danger to themselves or others“—should not be able to purchase firearms. Right? Right.

Making that law isn’t actually the trouble (expanding background checks is, of course, a different story). It’s already law, and has been on the books for awhile. The trouble is enforcing it.

The federal government maintains the National Instant Criminal Background Check System (NICS), a database of people who are federally prohibited from purchasing guns, including felons, people convicted of domestic violence, and individuals who meet the extreme mental illness criteria above. Except:

Federal law does not require State agencies to report to the NICS the identities of individuals who are prohibited by Federal law from purchasing firearms, and not all states report complete information to the NICS.

To recap: We have federal criteria that prohibits certain individuals from buying firearms. The feds maintain a database of known individuals for background checks (which take 30 seconds, per the regulation). But states aren’t required to offer the names of “prohibitors” to the database.

A Dangerous Distortion: Verizon’s Foray into Emergency Medical Services

Apr 25, 2013• 7

By Jonathon Feit

There’s always been difference between “truth” and “marketing truth,” the former being the more stringent of the two. The daily bombardment of media messaging plus occasional advertising extravaganzas (hello, Super Bowl!) has desensitized us to where consumers don’t mind the fine print that says “Do not try this at home,” “Professional driver on a closed course,” or “Screen images simulated.” Many people appreciate that Minority Report was released before screens could be controlled with fingertips; and the Tricorder has taken decades to jump from Star Trek to the X Prize.

“Marketing truth” turns irresponsible when it opens up false expectations – that is, when reality is conflated to the point that consumers can no longer distinguish between what is real and what “may be coming soon.” Great, emotionally affective commercials can do that. But emergencies – those critical moments when we feel life’s fragility – are not when we should have to stop and ask “Can they really do that?” This is precisely the burden presented by a variety of recent ads featuring Fire and EMS professionals, the most dangerous of which is produced by Verizon. Verizon’s spot risks making the public think that EMS providers and firefighters currently have access to more advanced technology in the field than, by and large, they do. The advertisement is disingenuous, which certain important facts flubbed for dramatic effect. But that happens in the marketing world everyday—why should it be any different in the case of emergency medical services or health information technology?

Quite simply, because to do so risks inculcating in the public a false sense of comfort with the state of EMS technology today; and moreover—to those among us whom seek to bring long-overdue innovations to the industry—it risks the public asking, “Doesn’t this already exist? We saw it on television, after all.”

The Email I Want to Send To Our Tech Guys But Keep Deleting…

Apr 24, 2013• 144

By Shirie Leng, MD

Dear Tech Guys:

So today I’m doing anesthesia for colonoscopies and upper GI scopes. Nowadays we have three board-certified anesthesiologists doing anesthesia for GI procedures every single day at my institution. I’ll probably do 8 cases today. I will sign into a computer or electronically sign something 32 times. I have to type my user name and password into 3 different systems 24 times. I’m doing essentially the same thing with each case, but each case has to have the same information entered separately. I have to do these things, but my department also pays four full-time masters-level trained nurses to enter patient information and medical histories into the computer system, sometimes transcribed from a different computer system. Ironically, I will also generate about 50 pages of paper, since the computer record has to be printed out. Twice.

No wonder almost everyone I know hates electronic medical records! I don’t know anything about computers, and I don’t know what systems other hospitals have. I may be dreaming of a world that doesn’t exist or that world is here and I haven’t heard about it. Nevertheless, here’s my wish list for a system that doctors would actually want to use:

1. Eliminate the User Names and Passords: You can’t tell me that in this day of retinal scans and hand-held computers that there isn’t a better way to secure data. What if each person had their own iPad that you only have to sign into ONCE a day that automatically signs your charts. If you’re worried about people leaving them sitting around use a retinal scan or fingerprint instant recognition system.

2. Eliminate the Paper: If you’re going to have full-time people entering data for you, why print it out? It’s on the computer for anyone to access.

3. All Data Systems Must Be Compatible: You can’t have patient data entered in one place that doesn’t automatically import into another place. If my anesthesia record can’t talk to the hospital OMR, I have to RE-TYPE everything in, which is completely ridiculous.

4. Everybody Has to Use the Same System: Everybody, state-wide. Right now, electronic records from a nearby hospital are not available at my hospital, even though the two hospitals are right across the street from each other.

5. Don’t Make Me Turn the Page All the important information about a patient should be on the first page you open when you look up a patient. I shouldn’t have to click six different tabs. Specific to anesthesia, all the relevant data about the patient including what medications they have received during the case should be automatically displayed on the screen when you start a case. Specific to primary care, all the latest labs and data, recent appointments with specialists, current med list and anything else the doctor wants to see commonly should be right on the first screen.

How Physician Practices Can Prepare for a Health Care Marketplace

Apr 24, 2013• 13

By Brian Klepper

What is the path forward for physicians who want to remain in private practice, outside the constraints of health system employment? How will the environment change and what new demands will that place on practices and physicians? What follows are the observations of one industry-watcher who has worked on all sides of health care, but who now spends most his time focused on the interests of those who pay for it. No crystal ball, but several trends are clear.

There are now concrete signs that health care’s purchasers are exhausted and seeking new solutions, that a competitive marketplace is emerging and getting increasing traction. As they abandon ineffective approaches, the paradigm that has dominated the industry for the past 50 years will be upended. The financial pressure felt by buyers will transfer to the supply side health industry that has come to take ever more money for granted.

For decades, fee-for-service payment, inclusive health plan networks, and a lack of quality, safety and cost transparency have been enforced by health industry influence over policy, effectively neutralizing the power of market forces.

Without market pressure, physicians have felt little need to understand their own performance relative to that of their peers. The variation of physician practice patterns within specialties has been high, with some physicians’ “optimizing their revenue opportunities” by veering wildly away from evidence-based practice. Even so, until recently in this dysfunctional environment, it has been nearly impossible to identify high and low performers.

The Salad Bar That Turned Around a Fortune 500 Company …

Apr 23, 2013• 13

By Vik Khanna

“The Effect of Price Reduction on Salad Bar Purchases at a Corporate Cafeteria.” An excellent peek at the kind of steps that employers ought to take to improve eating habits in their work forces: subsidize the purchase of healthy foods. In this CDC study, reducing the price of salads drove up consumption by 300%. If this was a stock, we would all rush out to buy it.

Influencing behavior through both choice architecture and pricing differentials challenges many employers, however. There is a fear factor in play (“some of my people will be unhappy”), as well as financial issues, because the corporate managers responsible for food services often have their compensation linked to the division’s profitability. You make a lot more money selling soda than you do selling romaine. The same perverse financial conundrum appears when corporate food service companies run cafeterias. The on-site chef and managers typically operate on a tightly managed budget that leaves them little flexibility to seek out and provide healthier options.

A chef employed by one of the largest corporate food service providers in the country told me last year that he could not substitute higher protein Greek yogurt for the sugar-soaked, low-protein yogurt in his breakfast bar. When I asked why, he told me that Greek yogurt was not on his ordering guide, and he was not allowed to buy it from a local club warehouse and bring it in. In this same company, beverage coolers were stuffed to overflowing with sugar-sweetened drinks, all of which were front and center (and cheap), while waters and low-fat milk were shunted to the side coolers. In another scenario, health system leaders I met with last year all raised their hands when I asked if they had wellness programs and kept them up when I asked if they also sold sugar-sweetened beverages in their cafeterias at highly profitable prices. The irony was completely lost on them. They had to be walked through the inconsistency of telling their employees to take (worthless) HRAs and biometrics, but then facilitating access to $0.69 22 oz fountain sodas.

“Did You Take Care of Tsarnaev?”

Apr 23, 2013• 6

By Shirie Leng, MD

I am affiliated with the institution where Dzhokhar Tsarnaev is currently hospitalized. I am friends with people who have treated him. I’m trying to stay away from those people; I would be unable to help asking them about him. They might be unable to help talking about him. There has been a flurry of emails and red-letter warnings cautioning people here not to talk about Mr. Tsarnaev or look him up on the EMR (Electronic Medical Record) system. Despite this there have been leaks of information and photos from various sources. It is virtually impossible to keep people from asking about him and talking about him. Curiosity is human nature. When human nature comes up against morals and laws, human nature will win a good percentage of the time. The question is: given what he has done, does this 19-year-old still have his right to privacy?

The answer, of course, is yes. The American Medical Association includes patient confidentiality in it’s ethical guidelines:

“…the purpose of a physicians ethical duty to maintain patient confidentiality is to allow the patient to feel free to make a full and frank disclosure of information…with the knowledge that the physician will protect the confidential nature of the information disclosed.”

Threre are legal guidelines as well, most notably with the Health Insurance Portability and Accountability Act, or HIPAA. This law was originally passed in 1996 to improve the efficiency and effectiveness of the health care system, allow people to switch jobs without losing their health insurance, and impose some rules on electronic medical information. Congress incorporated into HIPAA provisions that mandate the adoption of the Federal privacy protections for health information. The “simplified” administrative document for the privacy and security portions of HIPAA is 80 pages long. Basically your health information cannot be shared with ANYONE. Of course, there are exceptions to HIPAA. Continue reading…

Do Our Cells Have Their Own IP Address Yet?

Apr 23, 2013• 6

By Ali Ansary

In the future, implanted chips will have the ability to stop food absorption when caloric intake reaches 2200. Cells in our forearm will be able to monitor our glucose levels and adjust our insulin appropriately. These implantable cells or “chips” have their own IP address with their own circuitry that is connected to a network 24/7. Through this network, cells communicate with real-time super computers to synthesize the next step for an individual’s body. If Dr. Anthony Atala can utilize 3D printers to create a new kidney, then it is only a matter of time before we can incorporate the circuitry within an organ necessary to monitor its function wirelessly.

This was the future I was challenged to paint in my talk at TEDMED 2012 at the Kennedy Center for the Performing Arts in Washington, DC. With the conclusion of TEDMED 2013 last week, I ask myself, where are we one year later?

A caveat: The following are simple overviews on novel technologies I had been tracking over the past year and does no justice to the many amazing leaps we have made in innovative science and medicine during this time.

An Epic Voyage

Apr 22, 2013• 2

By Paul Levy

Several months ago, I wrote a blog post comparing customers’ experience with Epic with the Stockholm Syndrome.

I reminded people of the syndrome:

Stockholm syndrome, or capture-bonding, is a psychological phenomenon in which hostages express empathy and have positive feelings towards their captors, sometimes to the point of defending them. These feelings are generally considered irrational in light of the danger or risk endured by the victims, who essentially mistake a lack of abuse from their captors for an act of kindness.

Then, I noted:

What is striking about this company is the degree to which the CEO has made it clear that she is not interested in providing the capability for her system to be integrated into other medical record systems. The company also “owns” its clients in that it determines when system upgrades are necessary and when changes in functionality will be introduced. And yet, large hospitals sign up for the system, rationalizing that it is the best.

I quoted an article by Kenneth Mandl and Zak Kohane in the New England Journal of Medicine:

We believe that EHR vendors propagate the myth that health IT is qualitatively different from industrial and consumer products in order to protect their prices and market share and block new entrants. In reality, diverse functionality needn’t reside within single EHR systems, and there’s a clear path toward better, safer, cheaper, and nimbler tools for managing health care’s complex tasks.

A year ago, Forbes noted, “By next year 40% of the U.S. population–127 million patients–will have their medical information stored in an Epic digital record.”

It is this last point that we must now address, as I hear from my colleagues in the EHR world—no, not Epic’s competitors– that Epic engages in practices that well help cement that market share for years to come.