Supporters of the Big Data movement argue that data will change everything, but only once we break down the institutional and technological barriers that prevent us from getting at it. In his talk at TEDMED 2012 at the Kennedy Center, Stanford’s Atul Butte argues that the we already have more than enough to do real science, if only we know where to look.
Creative Commons did an amazing thing for copyright law. It made it understandable.
Creative commons reduced the complexity of letting others use your work with a set of combinable, modular icons.
In order for privacy policies to have meaning for actual people, we need to follow in Creative Commons footsteps. We need to reduce the complexity of privacy policies to an indicator scannable in seconds. At the same time, we need a visual language for delving deeper into how our data is used—a set of icons may not be enough to paint the rich picture of where you data is going.
In the fall of 2009, at the height of fears over swine flu, our research group discovered that a majority of clinical trial data for the anti-influenza drug Tamiflu ― data that proved, according to its manufacturer, that the drug reduced the risk of hospitalization, serious complications and transmission ― were missing, unpublished and inaccessible to the research community. From what we could tell from the limited clinical data that had been published in medical journals, the country’s most widely used and heavily stockpiled influenza drug appeared no more effective than aspirin.
After we published this finding in the British Medical Journal at the end of that year, Tamiflu’s manufacturer, Roche, announced that it would release internal reports to back up its claims that the drug was effective in reducing the complications of influenza. Roche promised access to data from 10 clinical trials, 8 of which had not been published a decade after completion, representing more than 4,000 patients from every continent except Antarctica. Independent verification of the data seemed imminent. But more than two years later, and despite repeated requests, we have yet to receive even a single full trial report. Instead, the manufacturer released portions of the reports, most likely a very small percentage of the total pages. (One of us, Tom Jefferson, has been retained as an expert witness in a lawsuit relating to some of these issues.)
In just about a month, the third Annual Health Datapalooza will take place in Washington, DC – a celebration of data-driven healthcare innovation (tax-payer funded data, by the way). The part of the program that I’m personally looking forward to is the Apps Expo of about a hundred or so health apps that will be showcased throughout the event. While there will be center stage presentations by a cavalcade of inspiring leaders (including Thomas Geotz and Bob Kocher), what is noteworthy is that there will be the opportunity to participate in roundtable discussions and deep dive sessions on top-of-mind areas of development such as big data, ACOs, and consumer data liberation. (liberacion!)
But what is the value in attendance? Better question, why has the event attracted more and more new attendees recently?
I’ve spent the last few years supporting private-sector healthcare innovation – especially around health IT. What I’ve come to appreciate from those dedicated to the space – whether a two person startup or a carve-out within a large technology prime – is that success at every stage of innovative development is predicated on how quickly one can create value based on the expectations of the relevant stakeholders at that stage.
In May 2008, when the Roper poll asked a random sample of Americans “If your medical records and personal health information, such as test results and doctor’s instructions, were available to you online, how likely do you think you would be to access those records and information?” Sixty-five percent said they were somewhat, very, or extremely likely to access their records. In the February 2009 stimulus bill, Congress asked the Health IT Policy Committee “to facilitate secure access by an individual to such individual’s protected health information” and “… to facilitate secure access to patient information by a family member, caregiver, or guardian acting on behalf of a patient…”
CMS now proposes that in 2014, hospitals receiving the billions of dollars of Stage 2 federal EHR incentive payments must provide patients with electronic access to their hospital discharge information within 36 hours of leaving the hospital. CMS is not only asking hospitals to give patients reasonable access to their own current and actionable health information, but it’s also trying to help patients and families address the wasteful and dangerous rates of hospital readmission and failures in continuity of care that haunt American healthcare. But the American Hospital Association is arguing that “Establishing a web portal or other mechanism to provide patients online access to this magnitude of data is unrealistic and premature.”
The deadline for comments to Stage 2 is upon us and a clear fork has emerged for federal regulators. The cats and dogs here are institutional vs. patient engagement. The institutional fork has been taken by the American Hospital Association. The patient fork is exemplified by the National Partnership for Women and Families. The primary argument is over patient access to their own information. The draft regulation suggests a 36 hour (or 4 days in other circumstances) delay. The AHA wants 30 days. Some patient advocates are seeking immediate and highly convenient access.
The fork in the road for federal regulators, with some $30 Billion dollars of incentives in hand, is whether to micromanage the institutions or to encourage patient-centered innovation. This choice is deeply entangled in the $Trillion realities of payment reform.
The micromanagement of institutions through increasingly complex regulations on EHR vendors, clerical and clinical staff seems like slow torture. We have institutions begging for relief. Large vendors are consolidating their lock-in business model as the barriers to entry into the health information market get higher and higher. Quality transparency is controversial and price transparency is almost unimaginable.
Data is only data until it is structured. Then it becomes powerful, relevant and insightful.
That was a key message from Ursula Burns, Xerox chairman and chief executive officer, on the first day of the World Health Care Congress in Washington, D.C. In opening the event with a fireside chat with Dr. Nancy Snyderman, chief medical editor for NBC News, Ursula talked about Xerox’s vision to improve health care including empowerment– ensuring that patients have a stake in their health, and realizing the true value of data. As Ursula said, “It’s not the data itself, but it’s recognizing actionable data.”
Here’s another way to think of it: Xerox provides the “smarts” around each aspect of health care such as:
·Turning information into insights through real-time clinical decision, patient behavior modeling, population management, and Meaningful Use reporting; and
·Putting insights into action, for example, through a health information exchange – connecting electronic medical records (EMRs) to give caregivers information, analytics and decision support tools that help improve patient care.
This three-part interview from World Health Care Congress with Markus Fromherz, chief innovation officer of Xerox Healthcare, covers some of the most exciting healthcare research and development going on at Xerox’s Palo Alto Research Center. Part one includes Markus’ thoughts on moving paper data to digital and describes the process in three layers – gaining access, drawing insight and taking action from what was learned.
In order to solve this problem, we have to surmount other problems – which are not just technological but also behavioral, cultural and financial.
But if you want an idea of what an extreme version of data-collection might look like, check out the application Placeme.
Now Placeme is *not* a Healthcare application. What Placeme does do, however, is to continually (in almost real-time) track the places that you visit. No check-ins; no need to enter and data – the application simply runs in the background and does its magic.
When you think about that (from the cultural perspective of today), that’s creepy.
And yet, this “creepy” model is the future. It represents the technological and cultural arc that social software is throwing us. We can fight it (and should in order to flesh out the nuances so we can ensure safety) but in the long-run we shall have to accept the trend and work accordingly.
So think of Placeme in terms of what the ‘Quantitative Self’ movement is attempting to achieve.
For the next three months, the Supreme Court will mull the constitutionality of the new health care law. At stake is the government’s requirement that its citizens buy private health insurance. But whatever the outcome, it’s a foregone conclusion that some fundamental change must be instituted in the financing of health care delivery.
Today, enormous sums of taxpayer money are spent on the administration of health care programs such as Medicaid. Those administrative costs could be sharply reduced and the savings put to what is really needed — providing health care. With the information technology available today, public agencies should consider eliminating their function as a government-run insurance operation and focusing their resources on paying providers to deliver care.
Consider Medicaid, the shared federal and state program for the poor. When Medicaid was created, it was designed to replicate the private insurance function. But the basic purpose of insurance is to protect the policy holder’s assets against a catastrophic event causing risk of personal bankruptcy. Because the very nature of qualifying for Medicaid requires recipients to first spend down their assets and then earn an annual income below a certain percentage of the federal poverty level, what assets is the policy protecting? The person doesn’t need health insurance. He needs health care.
When the government created Medicaid as a look-alike insurance product, it developed an oversight operation that has not kept up with what technology can do to make a system run more efficiently. And unlike private insurance, it built a system requiring monthly updates of each of its 50 million recipients’ eligibility, including filled-out and faxed-in monthly reports, income receipts, etc.