"health data" entries
An inside look at DocGraph, a data project that shows how the U.S. health care system delivers care.
Notice, October 2015: Certain versions of this data have been retracted. Please read more here.
At Strata RX in October I announced the availability of DocGraph. This is the first project of NotOnly Development, which is a Not Only For Profit Health IT micro-incubator.
The DocGraph dataset shows how doctors, hospitals, laboratories and other health care providers team together to treat Medicare patients. This data details how the health care system in the U.S. delivers care.
You can read about the basics of this data release, and you can read about my motivations for making the release. Most importantly, you can still participate in our efforts to crowdfund improvements to this dataset. We have already far surpassed our original $15,000 goal, but you can still get early and exclusive access to the data for a few more days. Once the crowdfunding has ended, the price will go up substantially.
This article will focus on this data from a technical perspective.
In a few days, the crowdfunding (hosted by Medstartr) will be over, and I will be delivering this social graph to all of the participants. We are offering a ransom license that we are calling “Open Source Eventually,” so participants in the crowdfunding will get exclusive access to the data for a full six months before the license to this dataset automatically converts to a Creative Commons license. The same data is available under a proprietary-friendly license for more money. For all of these “releases,” this article will be the go-to source for technical details about the specific contents of the file.
Data-driven decision engines will need patient experience to complete the feedback loop.
When I was looking for a place in Maine to go for care this summer, I went online to look at my options. I consulted hospital data from the government at HospitalCompare.HHS.gov and patient feedback data on Yelp, and then made a decision based upon proximity and those ratings. If I had been closer to where I live in Washington D.C., I would also have consulted friends, peers or neighbors for their recommendations of local medical establishments.
My brush with needing to find health care when I was far from home reminded me of the prism that collective intelligence can now provide for the treatment choices we make, if we have access to the Internet.
Patients today are sharing more of their health data and experiences online voluntarily, which in turn means that the Internet is shaping health care. There’s a growing phenomenon of “e-patients” and caregivers going online to find communities and information about illness and disability.
Aided by search engines and social media, newly empowered patients are discussing health conditions with others suffering from disease and sickness — and they’re taking that peer-to-peer health care knowledge into their doctors’ offices with them, frequently on mobile devices. E-patients are sharing their health data of their own volition because they have a serious health condition, want to get healthy, and are willing.
From the perspective of practicing physicians and hospitals, the trend of patients contributing to and consulting on online forums adds the potential for errors, fraud, or misunderstanding. And yet, I don’t think there’s any going back from a networked future of peer-to-peer health care, anymore than we can turn back the dial on networked politics or disaster response. Read more…
The United States National Institutes of Health (NIH) wants to tie development of mobile health apps to evidence-based research, and it hopes to do that with a new grant program. The imperative to align developers with research is urgent, given the strong interest in health IT, mobile health and health data. There are significant challenges for the space, from consumer concerns over privacy and mobile applications to the broader question of balancing health data innovation with patient rights.
To learn more about what’s happening with mobile health apps, health data, behavioral change and cancer research, I recently interviewed Dr. Abdul Sheikh. Our interview, lightly edited for content and clarity, follows.
What led you to your current work at NIH?
Dr. Abdul Sheikh: I’ve always had a strong grounding in public health and population health, but I also have a real passion for technology and informatics. What’s beautiful is, in my current position here as a program director at the National Cancer Institute (NCI), I have a chance to meld these worlds of public health, behavior and communication science with my passion for technology and informatics. Some of the work I did before coming to the NIH was related to the early telemedicine and web-based health promotion efforts that the government of Canada was involved in.
At NCI, I direct a portfolio of research on technology-mediated communication. I’ve also had the chance to get involved and provide leadership on two very cool efforts. One of them is leadership for our division’s Small Business Innovation Research Program (SBIR). I’ve led the first NIH developer challenge competitions as well.
The convergence of data, privacy and cost have created a unique opportunity to reshape health care.
Health care appears immune to disruption. It’s a space where the stakes are high, the incumbents are entrenched, and lessons from other industries don’t always apply.
Yet, in a recent conversation between Tim O’Reilly and Roger Magoulas it became evident that we’re approaching an unparalleled opportunity for health care change. O’Reilly and Magoulas explained how the convergence of data access, changing perspectives on privacy, and the enormous expense of care are pushing the health space toward disruption.
As always, the primary catalyst is money. The United States is facing what Magoulas called an “existential crisis in health care costs” [discussed at the 3:43 mark]. Everyone can see that the current model is unsustainable. It simply doesn’t scale. And that means we’ve arrived at a place where party lines are irrelevant and tough solutions are the only options.
“Who is it that said change happens when the pain of not changing is greater than the pain of changing?” O’Reilly asked. “We’re now reaching that point.” [3:55]
(Note: The source of that quote is hard to pin down, but the sentiment certainly applies.)
This willingness to change is shifting perspectives on health data. Some patients are making their personal data available so they and others can benefit. Magoulas noted that even health companies, which have long guarded their data, are warming to collaboration.
At the same time there’s a growing understanding that health data must be contextualized. Simply having genomic information and patient histories isn’t good enough. True insight — the kind that can improve quality of life — is only possible when datasets are combined.
Dr. Stephen Friend on open science and the need for a "GitHub for scientists."
To unlock the potential of health data for the public good, balancing health privacy with innovation will rely on improving informed consent. If the power of big data is to be applied to scientific inquiry in health care, unlocking genetic secrets, finding a cure for breast cancer or “preemptive health care,” changes in scientific culture and technology will both need to occur.
One element of that change could include a health data commons. Another is open access in the research community. Dr. Stephen Friend, the founder of Sage Bionetworks, is one of the foremost advocates of what I think of as “open science.” Earlier in his career, Dr. Friend was a senior vice president at Merck & Co., Inc., where he led the pharmaceutical company’s basic cancer research program.
In a recent interview, Dr. Friend explained what open science means to him and what he’s working on today. For more on the synthesis of open source with genetics, watch Andy Oram’s interview with Dr. Friend and read his series on recombinant research and Sage Congress.
How transparency, real-time feedback, and lessons from the police can improve health outcomes.
Dr. Atul Gawande (@Atul_Gawande) has been a bard in the health care world, straddling medicine, academia and the humanities as a practicing surgeon, medical school professor, best-selling author and staff writer at the New Yorker magazine. His long-form narratives and books have helped illuminate complex systems and wicked problems to a broad audience.
One recent feature that continues to resonate for those who wish to apply data to the public good is Gawande’s New Yorker piece “The Hot Spotters,” where Gawande considered whether health data could help lower medical costs by giving the neediest patients better care. That story brings home the challenges of providing health care in a city, from cultural change to gathering data to applying it.
This summer, after meeting Gawande at the 2012 Health DataPalooza, I interviewed him about hot spotting, predictive analytics, networked transparency, health data, feedback loops and the problems that technology won’t solve. Our interview, lightly edited for content and clarity, follows.
In the age of big data, Deven McGraw emphasizes trust, education and transparency in assuring health privacy.
Society is now faced with how to balance the privacy of the individual patient with the immense social good that could come through great health data sharing. Making health data more open and fluid holds both the potential to be hugely beneficial for patients and enormously harmful. As my colleague Alistair Croll put it this summer, big data may well be a civil rights issue that much of the world doesn’t know about yet.
This will likely be a tension that persists throughout my lifetime as technology spreads around the world. While big data breaches are likely to make headlines, more subtle uses of health data have the potential to enable employers, insurers or governments to discriminate — or worse. Figuring out shopping habits can also allow a company to determine a teenager was pregnant before her father did. People simply don’t realize how much about their lives can be intuited through analysis of their data exhaust.
To unlock the potential of health data for the public good, informed consent must mean something. Patients must be given the information and context for how and why their health data will be used in clear, transparent ways. To do otherwise is to duck the responsibility that comes with the immense power of big data.
In search of an informed opinion on all of these issues, I called up Deven McGraw (@HealthPrivacy), the director of the Health Privacy Project at the Center for Democracy and Technology (CDT). Our interview, lightly edited for content and clarity, follows. Read more…
A call for data scientists, technologists, health professionals, and business leaders to convene.
We are launching a conference at the intersection of health, health care, and data. Why?
Our health care system is in crisis. We are experiencing epidemic levels of obesity, diabetes, and other preventable conditions while at the same time our health care system costs are spiraling higher. Most of us have experienced increasing health care costs in our businesses or have seen our personal share of insurance premiums rise rapidly. Worse, we may be living with a chronic or life-threatening disease while struggling to obtain effective therapies and interventions — finding ourselves lumped in with “average patients” instead of receiving effective care designed to work for our specific situation.
In short, particularly in the United States, we are paying too much for too much care of the wrong kind and getting poor results. All the while our diet and lifestyle failures are demanding even more from the system. In the past few decades we’ve dropped from the world’s best health care system to the 37th, and we seem likely to drop further if things don’t change.
The very public fight over the Affordable Care Act (ACA) has brought this to the fore of our attention, but this is a situation that has been brewing for a long time. With the ACA’s arrival, increasing costs and poor outcomes, at least in part, are going to be the responsibility of the federal government. The fiscal outlook for that responsibility doesn’t look good and solving this crisis is no longer optional; it’s urgent.
There are many reasons for the crisis, and there’s no silver bullet. Health and health care live at the confluence of diet and exercise norms, destructive business incentives, antiquated care models, and a system that has severe learning disabilities. We aren’t preventing the preventable, and once we’re sick we’re paying for procedures and tests instead of results; and those interventions were designed for some non-existent average patient so much of it is wasted. Later we mostly ignore the data that could help the system learn and adapt.
It’s all too easy to be gloomy about the outlook for health and health care, but this is also a moment of great opportunity. We face this crisis armed with vast new data sources, the emerging tools and techniques to analyze them, an ACA policy framework that emphasizes outcomes over procedures, and a growing recognition that these are problems worth solving.
Dyson says it's time to focus on maintaining good health, as opposed to healthcare.
If we look ahead to the next decade, it’s worth wondering whether the way we think about health and health care will have shifted. Will health care technology be a panacea? Will it drive even higher costs, creating a broader divide between digital haves and have-nots? Will opening health data empower patients or empower companies?
As ever, there will be good outcomes and bad outcomes, and not just in the medical sense. There’s a great deal of thought around the potential for mobile applications right now, from the FDA’s potential decision to regulate them to a reported high abandonment rate. There are also significant questions about privacy, patient empowerment and meaningful use of electronic health care records.
When I’ve talked to US CTO Todd Park or Dr. Farzad Mostashari they’ve been excited about the prospect for health data to fuel better dashboards and algorithms to give frontline caregivers access to critical information about people they’re looking after, providing critical insight at the point of contact.
Kathleen Sebelius, the U.S. Secretary for Health and Human Services, said at this year’s Health Datapalooza that venture capital investment in the health care IT area is up 60% since 2009.
Michael Italia on making use of data collected in health care settings.
Michael Italia from Children's Hospital of Philadelphia discusses the tools and methods his team uses to manage health care data.