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June 26 2012

Health records support genetics research at Children's Hospital of Philadelphia

Michael Italia leads a team of programmers and scientists at Children's Hospital of Philadelphia (CHOP), Center for Biomedical Informatics, where they develop applications, data repositories, and web interfaces to support CHOP's leading roles in both treatment and research. Recently we recorded an interview discussing the collection of data at CHOP and its use to improve both care and long-term research.

Italia, who will speak on this topic at OSCON, describes how the informatics staff derived structured data from electronic health record (EHR) forms developed by audiologists to support both research and clinical care. He describes the custom web interface that makes data available to researchers and discusses the exciting potential of genomic sequencing to improve care. He also lists tools used to collect and display data, many of which are open source.

Particular topics in this video include:

  • The relationship between clinical care and research at Children's. [Discussed at the 00:22 mark]
  • The value of research using clinical data. [Discussed at the 02:30 mark]
  • The challenge of getting good data from health records. [Discussed at the 03:30 mark]
  • Tools for capturing, exporting, and displaying data. [Discussed at the 05:41 mark]
  • Making data useful to clinicians through a simple, modular web interface; tools used. [Discussed at the 12:07 mark]
  • Size of the database and user cohort. [Discussed at the 17:19 mark]
  • The ethical and technical issues of genome sequencing in medical treatment; benefits of sequencing. [Discussed at the 18:23 mark]
  • "Pick out the signal from the noise": integrating genetic information into the electronic health record and "actionable information". [Discussed at the 24:27 mark]

You can view the entire conversation in the following video:

OSCON 2012 Health Care Track — The conjunction of open source and open data with health technology promises to improve creaking infrastructure and give greater control and engagement to patients. Learn more at OSCON 2012, being held July 16-20 in Portland, Oregon.

Save 20% on registration with the code RADAR

Related:

June 15 2012

Top Stories: June 11-15, 2012

Here's a look at the top stories published across O'Reilly sites this week.

A reduced but important future for desktop computing
Josh Marinacci says most people will rely on mobile devices to handle their computing needs, but a select and small group of power users will continue to use desktop machines.

Big ethics for big data
"Ethics of Big Data" authors Kord Davis and Doug Patterson explore ownership, anonymization, privacy, and ways to evaluate and establish ethical data practices within an organization.

Stories over spreadsheets
Imagine a future where clear language supplants spreadsheets. In a recent interview, Narrative Science CTO Kris Hammond explained how we might get there.


Data in use from public health to personal fitness
Releasing public data can't fix the health care system by itself, but it provides tools as well as a model for data sharing.


What is DevOps?
NoOps, DevOps — no matter what you call it, operations won't go away. Ops experts and development teams will jointly evolve to meet the challenges of delivering reliable software to customers.


Velocity 2012: Web Operations & Performance — The smartest minds in web operations and performance are coming together for the Velocity Conference, being held June 25-27 in Santa Clara, Calif. Save 20% on registration with the code RADAR20.

June 08 2012

mHealth apps are just the beginning of the disruption in healthcare from open health data

Two years ago, the potential of government making health information as useful as weather data felt like an abstraction. Healthcare data could give citizens the same "blue dot" for navigating health and illness akin to the one GPS data fuels on the glowing map of geolocated mobile devices that are in more and more hands.

After all, profound changes in entire industries, take years, even generations, to occur. In government, the pace of progress can feel even slower, measured in evolutionary time and epochs.

Sometimes, history works differently, particularly given the effect of rapid technological changes. It's only a little more than a decade since President Clinton announced he would unscramble global positioning system data (GPS) for civilian use. President Obama's second U.S. chief technology officer, Todd Park, estimated that GPS data is estimated to have unlocked some $90 billion dollars in value in the United States.

In the context, the arc of the Health Data Initiative (HDI) in the United States might leave some jaded observers with whiplash. From a small beginning, the initiative to put health data to work has now expanded around the United States and attracted great interest from abroad, including observers from England National Health Service eager to understand what strategies have unlocked innovation around public data sets.

While the potential of government health data driving innovation may well have felt like an abstraction to many observers, in June 2012, real health apps and services are here -- and their potential to change how society accesses health information, deliver care, lowers costs, connects patients to one another, creates jobs, empowers care givers and cuts fraud is profound. The venture capital community seems to have noticed the opportunity here: according to HHS Secretary Sebelius, investment in healthcare startups is up 60% since 2009.

Headlines about rockstar Bon Jovi 'rocking Datapalooza' and the smorgasbord of health apps on display, however, while both understandable and largely warranted, don't convey the deeper undercurrent of change.

On March 10, 2010, the initiative started with 36 people brainstorming in a room. On June 2, 2010, approximately 325 in-person attendees saw 7 health apps demoed at an historic forum in the theater of Institute of Medicine in Washington, D.C, with another 10 apps packed into an expo in the rotunda outside. All of the apps or services used open government data from the United States Department of Health and Human Services (HHS).

In 2012, 242 applications or services that were based upon or use open data were submitted for consideration to third annual "Health Datapalooza. About 70 health app exhibitors made it to the expo. The conference itself had some 1400 registered attendees, not counting press and staff, and was sold out in advance of the event in the cavernous Washington Convention Center in DC. On Wednesday, I asked Dr. Bob Kucher, now of Venrock Capital and the Brookings Institution, about how the Health Data Initiative has grown and evolved. Dr. Kucher was instrumental to its founding when he served in the Obama administration. Our interview is embedded below:

Revolutionizing the healthcare industry --- in HHS Secretary Sebelius's words, reformulating Wired executive editor Thomas Goetz's 'latent data' to "lazy data" --- has meant years of work unlocking government data and actively engaging the developers, entrepreneurial and venture capital community. While the process of making health data open and machine-readable is far from done, there has been incontrovertible progress in standing up new application programming interfaces (APIs) that enable entrepreneurs, academic institutions and government itself to retrieve it one demand. On Monday, in concert with the Health Data Palooza, a new version of HealthData.gov launched, including the release of new data sets that enable not just hospital quality comparisons but insurance fees as well.

Two years later, the blossoming of the HDI Forum into a massive conference that attracted the interest of the media, venture capitalists and entrepreneurs from around the nation is a short-term development that few people would have predicted in 2010 but that a nation starved for solutions to spiraling healthcare costs and some action from a federal government that all too frequently looks broken is welcome.

"The immense fiscal pressure driving 'innovation' in the health context actually means belated leveraging of data insights other industries take for granted from customer databases," said Chuck Curran, executive director and general counsel or the Network Advertising Initiative, when interviewed at this year's HDI Forum. For example, he suggested, look at "the dashboarding of latent/lazy data on community health, combined with geographic visualizations, to enable “hotspot”-focused interventions, or info about service plan information like the new HHS interface for insurance plan data (including the API).

Curran also highlighted the role that fiscal pressure is having on making both individual payers and employers a natural source of business funding and adoption for entrepreneurs innovating with health data, with apps like My Drugs Costs holding the potential to help citizens and businesses alike cut down on an estimated $95 billion dollars in annual unnecessary spending on pharmaceuticals.

Curran said that health app providers have fully internalized smart disclosure : "it’s not enough to have open data available for specialist analysis -- there must be simplified interfaces for actionable insights and patient ownership of the care plan."

For entrepreneurs eying the healthcare industry and established players within it, the 2012 Health Data Palooza offers an excellent opportunity to "take the pulse of mHealth, as Jody Ranck wrote at GigaOm this week:

Roughly 95 percent of the potential entrepreneur pool doesn’t know that these vast stores of data exist, so the HHS is working to increase awareness through the Health Data Initiative. The results have been astounding. Numerous companies, including Google and Microsoft, have held health-data code-a-thons and Health 2.0 developer challenges. These have produced applications in a fraction of the time it has historically taken. Applications for understanding and managing chronic diseases, finding the best healthcare provider, locating clinical trials and helping doctors find the best specialist for a given condition have been built based on the open data available through the initiative.

In addition to the Health Datapalooza, the Health Data Initiative hosts other events which have spawned more health innovators. RockHealth, a Health 2.0 incubator, launched at its SXSW 2011 White House Startup America Roundtable. In the wake of these successful events, StartUp Health, a network of health startup incubators, entrepreneurs and investors, was created. The organization is focused on building a robust ecosystem that can support entrepreneurs in the health and wellness space.

This health data ecosystem has now spread around the United States, from Silicon Valley to New York to Louisiana. During this year's Health Datapalooza, I spoke with Ramesh Kolluru, a technologist who works at the University of Louisiana, about his work on a hackathon in Louisiana, the "Cajun Codefest," and his impressions of the forum in Washington:

One story that stood out from this year's crop of health data apps was Symcat, an mHealth app that enables people to look up their symptoms and find nearby hospitals and clinics. The application was developed by two medical students at Johns Hopkins University who happened to share a passion for tinkering, engineering and healthcare. They put their passion to work - and somehow found the time (remember, they're in medical school) to build a beautiful, usable health app. The pair landed a $100,000 prize from the Robert Wood Johnson Foundation for their efforts. In the video embedded below, I interview Craig Munsen, one of the medical students, about his application. (Notably, the pair intends to use their prize to invest in the business, not pay off medical school debt.)

There are more notable applications and services to profile from this year's expo - and in the weeks ahead, expect to see some of them here on Radar, For now, it's important now to recognize the work of all of the men and women who have worked so hard over the past two years create public good from public data.

Releasing and making open health data useful, however, is about far more than these mHealth apps: It's about saving lives, improving the quality of care, adding more transparency to a system that needs it, and creating jobs. Park spoke with me this spring about how open data relates to much more than consumer-facing mHealth apps:

As the US CTO seeks to scale open data across federal government by applying the lessons learned in the health data initiative, look for more industries to receive digital fuel for innovation, from energy to education to transit and finance. The White House digital government strategy explicitly embraces releasing open data in APIs to enable more accountability, civic utility and economic value creation.

While major challenges lie ahead, from data quality to security or privacy, the opportunity to extend the data revolution in healthcare to other industries looks more tangible now than it has in years past.

Business publications, including the Wall Street Journal, have woken up to the disruptive potential of open government data As Michael Hickins wrote this week, "The potential applications for data from agencies as disparate as the Department of Transportation and Department of Labor are endless, and will affect businesses in every industry imaginable. Including yours. But if you can think of how that data could let someone disrupt your business, you can stop that from happening by getting there first."

This growing health data movement is not placed within any single individual city, state, agency or company. It's beautifully chaotic, decentralized, and self-propelled, said Park this past week.

"The Health Data Initiative is no longer a government initiative," he said. "It's an American one. "

June 06 2012

Who owns patient data?

Who owns a patient's health information?

  • The patient to whom it refers?
  • The health provider that created it?
  • The IT specialist who has the greatest control over it?

The notion of ownership is inadequate for health information. For instance, no one has an absolute right to destroy health information. But we all understand what it means to own an automobile: You can drive the car you own into a tree or into the ocean if you want to. No one has the legal right to do things like that to a "master copy" of health information.

All of the groups above have a complex series of rights and responsibilities relating to health information that should never be trivialized into ownership.

Raising the question of ownership at all is a hash argument. What is a hash argument? Here's how Julian Sanchez describes it:

"Come to think of it, there's a certain class of rhetoric I'm going to call the 'one-way hash' argument. Most modern cryptographic systems in wide use are based on a certain mathematical asymmetry: You can multiply a couple of large prime numbers much (much, much, much, much) more quickly than you can factor the product back into primes. A one-way hash is a kind of 'fingerprint' for messages based on the same mathematical idea: It's really easy to run the algorithm in one direction, but much harder and more time consuming to undo. Certain bad arguments work the same way — skim online debates between biologists and earnest ID (Intelligent Design) aficionados armed with talking points if you want a few examples: The talking point on one side is just complex enough that it's both intelligible — even somewhat intuitive — to the layman and sounds as though it might qualify as some kind of insight ... The rebuttal, by contrast, may require explaining a whole series of preliminary concepts before it's really possible to explain why the talking point is wrong."

The question "Who owns the data?" presumes that the notion of ownership is valid, and it jettisons those foolish enough to try to answer the question into a needless circular debate. Once you mistakenly assume that the question is answerable, you cannot help but back an unintelligible position.

Ownership is a poor starting point for health data because the concept itself doesn't map well to the people and organizations that have relationships with that data. The following chart shows what's possible depending on a given role.



















































Person / Privilege Delete their copy of data Arbitrarily (without logs) edit their copy of data Correct the provider's copy of the data Append to the provider's copy of the data Acquire copies of HIPAA-covered data Sourcing Provider No. HIPAA mandates that the provider who creates HIPAA-covered data must ensure that a copy of the record is available. Mere deletion is not a privilege that providers have with their copies of patient records. Most EHR systems enforce this rule for providers.

No. While providers can change the contents of the EHR, they are not allowed to change the contents without a log of those changes being maintained. Many EHRs contain the concept of "signing" EHR data, which translates to "the patient data entering the state where it cannot be changed without logging anymore."

Yes. Providers can correct their copy of the EHR data, providing they maintain a copy of the incorrect version of the data. Again, EHR software enforces this rule.
Yes. The providers can merely add to data, without changing the "correctness" of previous instances of the data. EHR systems should seamlessly handle this case.
Sometimes. Depending on the ongoing "treatment" status of the patient, providers typically have the right to acquire copies of treatment data from other treating providers. If they are "fired," they can lose this right.
  Person / Privilege Delete their copy of data Arbitrarily (without logs) edit their copy of data Correct the provider's copy of the data Append to the provider's copy of the data Acquire copies of HIPAA-covered data
Patient rights Yes, they can delete their own copies of their patient records, but requests to providers that their charts be deleted will be denied.
No. Patients cannot change the "canonical" version of a patient record.

No. While patients have the right to comment on and amend the file, they can merely suggest that the "canonical" version of the patient record be updated.

Yes. The patient has the right to append to EHR records under HIPAA. HIPAA does not require that this amendment impact the "canonical" version of the patient record, but these additions must be present somewhere, and there is likely to be a substantial civil liability for providers who fail to act in a clinically responsible manner on the amended data. The relationship between "patient amendments" and the "canonical version" is a complex procedural and technical issue that will see lots of attention in the years to come.

Usually. Patients typically have the right to access the contents of an EHR system, assuming they pay a copying cost. EHRs frequently make this copying cost unreasonable, and the results are so dense that they are not useful. There are also exceptions to this "right to read," including psychiatric notes and legal investigations.
  Person / Privilege Delete their copy of data Arbitrarily (without logs) edit their copy of data Correct the provider's copy of the data Append to the provider's copy of the data Acquire copies of HIPAA-covered data
True Copyright Ownership (i.e. the relationship you have with a paper you have written or a photo you have taken) Yes. You can destroy things you own. Yes. You can change things you own without recording what changes you made. No. If you hold copyright to material and someone has purchased a right to a copy of that material, you cannot make them change it, even if you make "corrections." Sometimes, people use licensing rather than mere "copy sales" to enforce this right (i.e. Microsoft might have the right to change your copy of Windows, etc.).
No. Again, you have no rights to change another person's copy of something you own the copyright to. Again, some people use licensing as a means to gain this power rather than just "sale of a copy."
No. You do not have an automatic right to copies of other people's copyrighted works, even if they depict you somehow. (This is why your family photographer can gouge you on reprints.)   Person / Privilege Delete their copy of data Arbitrarily (without logs) edit their copy of data Correct the provider's copy of the data Append to the provider's copy of the data Acquire copies of HIPAA-covered data

IT Specialist

Kind of. Regulations dictate that IT specialists and vendors should not have the right to delete patient records. But root (or admin) access to the underlying EHR databases ensure that only people with backend access can truly delete patient records. Only people with direct access to source code or direct access to the database can completely circumvent EHR logging systems. The "delete privilege" is somewhat difficult to accomplish entirely without detection, however, since it is likely that someone (i.e. the patient) will know that the record should be present.

Yes. Source code or database-level access ensures that patient records can be modified without logging.

Yes. Source code or database-level access ensures that patient records can be modified without logging.

Yes. Source code or database-level access ensures that patient records can be modified without logging.

No. Typically, database administrators and programmers do not have the standing to request medical records from other sources.
 

Ergo, neither a patient nor a doctor nor the programmer has an "ownership" relationship with patient data. All of them have a unique set of privileges that do not line up exactly with any traditional notion of "ownership." Ironically, it is neither the patient nor the provider (when I say "provider," this usually means a doctor) who is closest to "owning" the data. The programmer has the most complete access and the only role with the ability to avoid rules that are enforced automatically by electronic health record (EHR) software.

So, asking "who owns the data?" is a meaningless, time-wasting, and shallow conceptualization of the issue at hand.

The real issue is: "What rights do patients have regarding healthcare data that refers to them?" This is a deep question because patient rights to data vary depending on how the data was acquired. For instance, a standalone personal health record (PHR) is primarily governed by the end-user license agreement (EULA) between the patient and the PHR provider (which usually gives the patient wildly varying rights), while right to a doctor's EHR data is dictated by both HIPAA and Meaningful Use standards.

Usually, what people really mean when they say "The patient owns the data" is "The patient's needs and desires regarding data should be respected." That is a wonderful instinct, but unless we are going to talk about specific privileges enabled by regulation or law, it really means "whatever the provider/programmer holding the data thinks it means."

For instance, while current Meaningful Use does require providers to give patients digital access to summary documents, there is no requirement for "complete" and "instant" access to the full contents of the EHR. While HIPAA mandates "complete" access, the EHR serves to make printed copies of digitized patient data completely useless. The devil is in the details here, and when people start going on about "the patient owning the data," what they are really doing is encouraging a mental shortcut that cannot readily be undone.

Note: This is a refresh of an article originally published here. Photo on home and category pages: Stethoscope by rosmary, on Flickr

Meaningful Use and Beyond: A Guide for IT Staff in Health Care — Meaningful Use underlies a major federal incentives program for medical offices and hospitals that pays doctors and clinicians to move to electronic health records (EHR). This book is a Rosetta Stone for the IT implementer who wants to help organizations harness EHR systems.


Related:


May 22 2012

Quantified me

For some reason I have an aversion to the quantified self terminology. I guess I'm suspicious of excessive overt tracking of stuff that I hope to make into unconscious habit. It probably goes back to when I used to be a runner. I ran a couple of marathons and I would of course log every run and used upcoming races to motivate my training. I ran with a pulse monitor and used the real-time feedback to adjust my pace to the intention of each training session.

I was incredibly disciplined about my training right up until I stopped improving. Once I plateaued I just couldn't stick with it. I experienced a similar pattern with biking, rowing, yoga, and everything else I tried. Train hard, track everything, plateau, quit.

Then a few years ago I read about a study that looked at motivation and it made the point that sometimes leaving things open ended actually improves our ability to stick with it. I've been looking for that study for two years but can't find it again. It has stuck in my head though and fundamentally changed how I think about things. It's made much more skeptical of the value of competitions and other goals in achieving long-term fitness. And something is different for me now because I've been doing CrossFit for three years without quitting. Of course, it might just be that I haven't plateaued yet. But I also think nurturing an open-ended mindset has helped.

Having plateaued and quit so many times I guess I'm just skeptical of the value of tracking the minutia of my exercise life. I wouldn't have known I plateaued if I hadn't tracked the data after all.

So not too long ago when Sara Winge forwarded me a link to an article on the "datasexual" with the subject line "You've been memed" I was taken aback. "Me? I don't track stuff. I don't own a Fitbit. In fact, I'm a huge skeptic of the value of all this stuff. To me it seems too much like putting the cart of technology before the horse of just doing the work." But then I thought about it honestly and I had to admit it. Who am I kidding? I'm an obsessive tracker.

I track every Crossfit workout on Beyond The Whiteboard. I started a paleo / ancestral health diet in December and I use a kitchen scale to measure portions. I kept a journal of every meal for three months and when that got cumbersome I started taking a picture of them with my phone. I do it to encourage consciousness of what I'm eating and to make sure I'm keeping my macronutrient balance where it should be. I weigh myself at least three times each week and log weight, waist, and neck measurements each time to estimate body fat.

Quantiifed data

Not too long ago after I rowed what felt like a fast 2k during a crossfit workout I dug up my old logs from the '90s to see how it compared to the twenty-something me (slower of course, but not awful). I still had those logs and knew where to find them.

From there it gets more obsessive. Once I changed my eating habits I started getting a full lipid panel and other tests every three months to assess the impact of my new high fat / low carb diet (I get over 2/3 of calories from fats now). The next time around I plan to add tests for inflammation markers and a few other things.

I wasn't happy with my doctor only being able to order fasting blood sugar though, so I bought a glucometer and started monitoring my own real-time blood sugar. I measure fasting and +1, +2, and +3 hour postprandial glucose levels after various meals to evaluate my insulin response and to better tune my diet. I also occasionally measure pre- and post-workout glucose levels to optimize when to workout relative to mealtime.

Periodic at home A1c tests verify that my long-term glucose levels are in keeping with what I'm measuring in real time — as a correlation to verify test accuracy and to help me interpret the short-term results. Oh, and I ordered a 23andMe test kit to see (among other things) if I have any genetic disposition to diabetes.

So, I guess I have to admit it. Quantifying the self isn't just something other people do, it's something I do. Yet I remain a skeptic.

The line I'm trying to walk is between obsessive tracking that results in post-plateau burnout and using tracking to maintain awareness and intention while trying to remain open ended. "Maybe I'll work out today." "Maybe I'll lose a few pounds, or maybe I'll gain a few." But at the same time I want to take advantage of the awareness that comes from tracking. More importantly, I want to know what the data says about how healthy I am. A degradation in insulin response wouldn't just be a problem with a plateauing exercise program after all, it would have major long-term health impact.

Related:

Four short links: 22 May 2012

  1. New Zealand Government Budget App -- when the NZ budget is announced, it'll go live on iOS and Android apps. Tablet users get details, mobile users get talking points and speeches. Half-political, but an interesting approach to reaching out to voters with political actions.
  2. Health Care Data Dump (Washington Post) -- 5B health insurance claims (attempted anonymized) to be released. Researchers will be able to access that data, largely using it to probe a critical question: What makes health care so expensive?
  3. Perl 5.16.0 Out -- two epic things here: 590k lines of changes, and announcement quote from Auden. Auden is my favourite poet, Perl my favourite programming language.
  4. WYSIHTML5 (GitHub) -- wysihtml5 is an open source rich text editor based on HTML5 technology and the progressive-enhancement approach. It uses a sophisticated security concept and aims to generate fully valid HTML5 markup by preventing unmaintainable tag soups and inline styles.

May 21 2012

What do mHealth, eHealth and behavioral science mean for the future of healthcare?

We're living through one of the most dynamic periods in healthcare in our collective history. Earlier this year, Dr. Farzad Mostashari, the national coordinator of health IT, highlighted how the web, data and epatients are poised to revolutionize healthcare. The Internet is shaping healthcare in many ways, from the quantified self movement to participatory medicine, and even through the threat of a new "data divide" driven by unequal access to information, algorithmic and processing power.

Dr. Audie AtienzaInto this heady mix, add the mobile computing revolution, where smart devices rest in the pockets of hundreds of millions of citizens, collecting data and providing access to medical information. There's also the rapidly expanding universe of healthcare apps that promise to revolutionize how many services are created, distributed and delivered.

This month, I had the opportunity to discuss some of these trends with Dr. Audie Atienza (@AudieAtienza), a researcher who focuses on behavioral science and healthcare. Our interview, lightly edited for content and clarity, follows.

We first met when you were a senior health technology adviser at the U.S. Department of Health and Human Services (HHS). What do you do now?

Audie Atienza: Working with Todd Park at the Department of Health and Human Services (HHS) was a distinct privilege and an honor. I learned a great deal working at HHS with Todd. I am now at the new Science of Research and Technology Branch of the National Cancer Institute, National Institutes of Health.  My title is Behavioral Scientist and Health Scientist Administrator. In a typical week, I attend health-technology-related conferences and meetings, work with colleagues across HHS and the federal government on health-technology-related initiatives, discuss funding opportunities with extramural researchers, and engage in scientific research related to health technology and/or cancer control.

How well did your education prepare you for your work?

Audie Atienza: My undergraduate, graduate and post-doctoral education has provided me with the critical thinking skills and knowledge that is required of a health researcher. My interest in health technology actually started when I was a Fellow at Stanford University, where I was gathering data on cardiovascular disease risk factors using paper and pencil diaries.  Using paper and pencil measures seemed so inefficient. Study participants sometimes forgot to complete the diaries or had incomplete entries — and sometimes the handwriting was difficult to decipher.  So, my mentor, Dr. Abby King, and I collaborated with Dr. BJ Fogg (also at Stanford) and we "went digital" with the cardiovascular disease risk factor assessments. (We used "state of the art" PDAs at the time.)  This fortuitous collaboration and the "there has to be a better way to do this" idea launched me into the field of electronic and mobile health.

What does "eHealth" mean now?

Audie Atienza: After my postdoctoral fellowship at Stanford, I accepted a position at the National Cancer Institute (NCI), Health Promotion Research Branch.  The NCI offered me the opportunity to further explore the field of electronic health (or eHealth) on a national (U.S.) and international scale.  The term "eHealth" generally represents the use of electronic or digital information technology to assess and/or modify health behaviors, states and outcomes.

When I arrived at NCI, I was asked to bring the best and brightest behavioral researchers together to discuss how to assess health in "real-time."  A book was published based on this meeting: "The Science of Real-Time Data Capture Self-Reports in Health Research." Other national and international conferences followed, including the 2010 mHealth Summit, in which I was intimately involved.

How does behavioral science affect our capacity to understand the causes of cancer?

Audie Atienza: It is clear that behavioral factors contribute to cancer and many other diseases, like diabetes and heart disease.  For example, the link between smoking and cancer is well established. There is also a solid body of research that has linked obesity, physical inactivity, and poor diet to various cancers. The Centers for Disease Control (CDC) reports that 69% of U.S. adults are currently overweight or obese.[Data on adults: PDF and children: PDF]

Accurately measuring and changing these everyday health behaviors — including smoking, physical activity, what people eat — is not easy. This is where technology can be of great assistance. Through sensors, cell phones, GPS systems, social networking technology, and web-based technology, we may be able to better assess and hopefully improve these key health behaviors that contribute to cancer and other diseases.

We are, however, just at the beginning of discovering how to best develop and utilize technology to improve the health of individuals and the public.  There is much work to be done to determine what is effective and what isn't.

How do mobile devices figure into that work?

Audie Atienza: Mobile technology is everywhere. We are seeing more integrated devices, like smartphones with cameras, accelerometers, GPS, and all types of apps.  But it isn't about the technology — a phrase I have borrowed from Todd Park. It's really about addressing health issues and improving the health of individuals and the public.  If technology can facilitate this, then great. But using technology may not always be the best way to improve health and well-being.  This is a critical research question.

How is mobile technology being applied to specific health issues?

Audie Atienza: Mobile technology can be (and is being) applied to address many different health and disease issues: infection disease (AIDS/HIV, tuberculosis, influenza), chronic disease (heart disease, cancer, diabetes, arthritis, asthma), mental health (depression, stress, anxiety), child and maternal health (pregnancy, infant care, childhood obesity), gerontology (healthy living in place, falls prevention, caregiving), health promotion (e.g., exercise, diet, smoking cessation, cancer screening, sun safety), and health-provider-related issues (medication adherence, patient-provider communication, point-of-care diagnostics, vital signs monitoring).

Mobile technology cuts across the disease and health spectrum with great potential to address problems that have been previously difficult to solve.  It is difficult to say which mobile health technology is most important because they are all addressing distinct and critical issues.  Heart disease and cancer are the leading causes of death in the United States. Others may argue that infectious diseases and maternal/child health are the most critical issues to address globally. Still others may argue for tobacco control and reducing obesity (increasing physical activity and improving nutrition).  The National Institutes of Health (NIH) has 27 institutes and centers (ICs), each with a particular mission.  More than 20 of the 27 ICs are currently funding mobile technology-related research.

What do we need next in mHealth?

Audie Atienza: More research. We need to better understand what works and what does not. Researchers who have systematically reviewed smartphone health apps (e.g., smoking cessation, diabetes) have found that most are not based on established public health or clinical guidelines. Very few have actually assessed whether the apps are effective in changing health outcomes. With thousands of apps, sensors, and other mobile health tools currently available, it can be difficult for the user to know what is effective, useful, and (most importantly) safe.

How close are we to a real tricorder? (There's now an X Prize for that.)

Audie Atienza: I love science-fiction and "Star Trek"!  Certainly, mobile sensors and monitors currently exist that can accurately monitor physiological states and vital signs. And the technology is becoming increasingly integrated and more powerful.  But, to have an all-in-one mobile device that can assess and diagnose health and diseases as well as, if not better than, a clinical provider is a very tall order. If such a tool or prototype is developed, it will be science and research that will determine if the "tricorder" is effective or not.  Time will tell whether such a tool can be developed.  While I am all for reducing diagnostic errors, I personally would be hesitant to accept a diagnosis from only a mobile device without the clinical judgment of a medical or health professional.

OSCON 2012 Healthcare Track — The conjunction of open source and open data with health technology promises to improve creaking infrastructure and give greater control and engagement to patients. Learn more at OSCON 2012, being held July 16-20 in Portland, Oregon.

Save 20% on registration with the code RADAR20

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May 06 2012

Principles of patient access in Directed Exchange

The Health Insurance Portability and Accountability Act (HIPPA) is good law. HIPPA formalized principles of patient privacy that should have been codified industry norms for more than 50 years (better late than never). HIPPA provided the right to patients in the U.S. to get access to their own healthcare records. The law struck reasonable balances on hundreds of complicated issues in order to achieve these goals. The law solved more problems, by far, than it created. Which is as close to the definition of good government as I can imagine. Patients are better off after HIPPA than before.

Sadly, the "letter of the law" in HIPPA is frequently either ignored or worse, fully embraced, in order to make patient access to their own healthcare data more cumbersome. This is evidenced nowhere better than Regina Holiday's experience with access to her husband's medical records. To make a long story short, she was able to acquire an unpublished manuscript of a Stephen King novel, sooner and for less money than she was able to get her husband's medical records.

Principle zero: Some clinicians will do anything they can to make patient access to their health records impossible or cumbersome.

Regina's work, detailing her experience with her husband is titled 73 cents, because that's how much it cost to get one page of her husband's medical record. HIPPA allows hospitals and clinicians to charge a "reasonable" copying fee for access to patient records. The problem with that is that in the digital age, a single healthcare record print out looks like this:

A single EHR record, printed out
A partial printout of a patient's medical record.



This is what happens when you print out a digital health record. Having patients pay the copying costs for access to medical records makes a simple presumption: there are only a few pages there. Obviously no patient will be able to afford copying costs in the age of all-digital records.

Principle one: Patient access to their own healthcare records must be digital once the record is digital.

Once you concede that access to the patient's medical record must be digital, we can discuss the push vs. pull question. When someone else on the Internet has data that is important to you, you can generally find ways to have it "pushed" to you or you can choose to "pull" it. The simplest example is the weather. You can always check the weather easily online by visiting a website (by pulling). But you can also have software text you when it is going to rain (by pushing).

There are advantages of both push and pull approaches for patient access to data. People who are excited about the pull model tend to focus on the benefits of the "portal" requirements in Meaningful Use, and those that favor the push model are excited about directed exchange. Without getting into the debate, I can posit that there are some cases where push access to patient data is critical. Without supporting patient participation in directed exchange we regulate patients to second-class citizens with regard to healthcare exchange. That is unacceptable. Patients should be first-class citizens in healthcare exchange.

Principle two: Patients should be able to participate in health information exchange as first-class citizens.

The Office of the National Coordinator for Health Information Technology (ONC) should be applauded for requiring directed exchange with patients in the current proposed rule. I hope that ONC does not back off of this new requirement.

The current proposed rule making, however, is silent on a critical issue for directed health information exchange. How do we ensure that providers will not refuse to communicate with patients over directed exchange because of bogus "security concerns"? As we see with the copying costs under HIPPA, every potential barrier to a patient's access to data will be used against patients.

There are already rumors of cases in the pilots of directed exchange where organizations are using the trust architecture of the Direct Project to refuse to communicate with certain parties. While that might be reasonable between institutions (do you really think Planned Parenthood will ever automate communication with Catholic charity clinics or vice-versa?), it is absolutely critical that this not hamper patient-clinician communication.

When we first designed the Direct Project Trust model, we presumed that patient-clinicians communication would take place based on "business-card" identity verification. That meant that when a patient provided a clinician with a public key (no matter how they did that) the clinician would trust it because the patient provided the public key. We did this because we knew that if clinicians could reject a patient's public key based on "security concerns," they would do so. Either the clinicians (or more likely the vendors that they hired) would choose directed exchange "partners" that were "approved" and "secure," ensuring that the patient's experience of directed exchange was merely a more extensive menu of patient portal options. Patient data is very valuable and controlling the flow of patient data is central to more business plans than I care to count.

In order for patients to be first-class citizens in health information exchange, they should have the right to send their records, in an automated fashion, anywhere they want. Even if it meant sending it to a service that the patient was enthusiastic about, but the clinician disapproved of (i.e. qpid.me). In the world of secure email enabled by public-key infrastructure (PKI), that translates to clinicians must accept any public key/direct address presented by a patient in a reasonable manner. This acceptance must be unconditional, but should probably mean limiting the acceptance of that key to communication with just that patient. Anything less than this means that the patient is a second-class citizen with regards to the information exchange of their own data.

Conclusion: ONC should require that clinicians communicate with a patient's chosen directed exchange provider, which means accepting any public key presented by a patient in a reasonable manner.

The community at Direct Trust is working hard to agree on what "reasonable manner" should mean, exactly. Here is my latest proposal on the subject, and here are similar ideas from Dr. David Kibbe. Eventually the Direct Trust community will knock out a firm understanding on the specific ways that might be "reasonable" for a patient to provide a certificate. But we are certainly agreed that without firm requirements on certificate acceptance, this issue will be used by clinicians to limit where patients can send their own data.

As the U.S. federal government is preparing to pay healthcare providers to adopt electronic health records (EHR) they will insist that those doctors/hospitals/etc. show that they are using the new software in clinically meaningful ways. On Monday (May 7, 2012) they will be accepting comments on the second stage of the requirements that clinicians must meet in order to receive compensation. These requirements are usually short-handed as "meaningful use."

I will be submitting this blog post as my comments to that process. Others will be submitting comments that directly contradict the principles and conclusions I write here. Most notably the American Hospital Association (AHA) has argued that the requirements for patient portals and for providing patients with access to their digital record should be entirely removed from the meaningful use standards (PDF). Specifically:

"Our members are particularly concerned with the proposed objective to provide patients with the ability to view, download and transmit large volumes of protected health information via the Internet (a "patient portal"). The AHA believes that this objective is not feasible as proposed, raises significant security issues, and goes well beyond current technical capacity. We also believe that CMS should not include this objective because the Office of Civil Rights, and not CMS, regulates how health care providers and other covered entities fulfill their obligations under the Health Insurance Portability and Accountability Act (HIPAA), including the obligation to give patients access to their health records."

This is fairly ironic, since the report also says:

"To date, OCR has received comments on its own significantly flawed original proposal to implement this section of HITECH, but has yet to finalize the standard."

Apparently, AHA is not satisfied with any government agency's interpretation of giving electronic access to patient data. The AHA would prefer that patients continue to wait the same amount of time for access to their digital records that they do for their paper records. Specifically:

"Further, 30 days are necessary to make determinations about how to respond to a request no matter the format of the protected health information. While providing an electronic copy of protected health information maintained in an EHR eventually may be facilitated more easily by technology, the process of determining which records are relevant and appropriate takes the same amount of time as it does for evaluating paper records."

Of course, this is entirely false. Indeed, HIPPA does maintain that certain parts of healthcare records (i.e. a psychiatrist's notes) and disclosures (i.e. when the FBI asks for records) are not subject to patient access. An EHR should be capable of understanding which parts of an EHR record are subject to HIPPA and which are not. If the EHR system can understand this distinction, then responses to HIPPA requests can be made in near-real-time. If the EHR system cannot make the distinction between which portions of the record to automatically provide to honor a HIPPA patient access request, then having 30 days is not going to be enough. Can you imagine a nurse reading through the entire stack of papers above to ensure that a certain mental health diagnosis is redacted?

One of the most critical features of patient participation in directed exchange is the patient's capacity to prevent the spread of bad information as it is happening. Apparently, the AHA believes that patients should tolerate the spread of mis-information in their health records to other institutions for a month before correcting it. This of course works in every situation where patients can wait a whole month to get correct information to other hospitals and clinicians.

I would like to be the first to welcome the American Hospital Association to the digital age. (Okay, maybe the second.) From a technology perspective, there is nothing at all that would prevent patients from receiving copies of their updated digital health records seconds after it is "signed" by their clinicians. Inside those seconds is plenty of time to digitally determine whether sharing with the patient is appropriate, legal and safe. Seconds after a patient like me receives data, I intend to process it in an automated fashion. It is not unreasonable, in this new digital world, for me to get a text message that a doctor has ordered a medication that I am allergic to. I wish to get that message after the doctor has ordered the medication, but before I receive it in my IV.

In this new digital world, 36 hours is unreasonable. It means that humans continue to be involved in tasks that can be performed perfectly by a computer without errors. Even 36 hours means that doctors, nurses and hospital administrators are still "thinking in paper." Thirty-six hours means that you still do not view me, the patient, as an equal data partner. It means that I am blind to the data in your hospital at the only time it really matters, which is right now. Health data that is 36-hours old can only be analyzed as a post-mortem and data that is 30-days old is already rotting. As a patient, 36 hours is a short-term solution. It is an opportunity for you to rethink how information flows in your hospitals. It is an opportunity for you to rethink the notions of "inside" the hospital and "outside" the hospital.

This is not that I do not take your point regarding the reconciliation of the policies from the perspective of HIPPA and meaningful use. Two time-lines for compliance is difficult. But the reconciliation is to speed HIPPA up, not slow meaningful use down. The notion that you will give patients a stack of paper like the one above 30 days after it is useful is a bad joke. It was a bad joke 20 years ago, when the technologies already existed to fix the problem, but you decided that the patient's experience was not worth that investment.

There is always something you can do, if you feel as strongly about this as I do.

Meaningful Use and Beyond: A Guide for IT Staff in Health Care — Meaningful Use underlies a major federal incentives program for medical offices and hospitals that pays doctors and clinicians to move to electronic health records (EHR). This book is a rosetta stone for the IT implementer who wants to help organizations harness EHR systems.

Photo: Medical record printout by jodi0327, on Flickr

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February 24 2012

Four short links: 24 February 2012

  1. Excel Cloud Data Analytics (Microsoft Research) -- clever--a cloud analytics backend with Excel as the frontend. Almost every business and finance person I've known has been way more comfortable with Excel than any other tool. (via Dr Data)
  2. HTTP Client -- Mac OS X app for inspecting and automating a lot of HTTP. cf the lovely Charles proxy for debugging. (via Nelson Minar)
  3. The Creative Destruction of Medicine -- using big data, gadgets, and sweet tech in general to personalize and improve healthcare. (via New York Times)
  4. EFF Wins Protection of Time Zone Database (EFF) -- I posted about the silliness before (maintainers of the only comprehensive database of time zones was being threatened by astrologers). The EFF stepped in, beat back the buffoons, and now we're back to being responsible when we screw up timezones for phone calls.

November 04 2011

Why developers should enter health IT contests

Patient safety is a movement within healthcare to reduce medical errors. Medical errors are a substantial problem in the healthcare industry, with a size and scope similar to car accidents: approximately the same number of deaths per year, about the same number of serious injuries. Personally I think working in patient safety is the simplest way for a geek to make a meaningful difference.

With that in mind I would like to promote a new developer contest sponsored by the Office of the National Coordinator (ONC), Partnership for Patients and hosted by Health 2.0: Ensuring Safe Transitions from Hospital to Home Challenge. As the name suggests, the contest is focused on the process of handing a patient over from an in-patient environment (in the hospital) to an out-patient environment (all the care that is not in a hospital).

I will be one of the judges for this contest and there are already enough "star players" submitting as teams in the contest that I know judging is going to be hard. The first prize is $25,000. That kind of money starts looking like seed-round funding rather than just a pat on the head. That is intentional on the part of both Health 2.0 and ONC. These contests are a way for ONC to find really amazing health IT ideas and help them transition into more substantial projects, with no strings attached. If you can prove to the judges that you have the best new idea and you can flesh it out well enough to make it clear that it has a chance of working, then you can walk away with enough cash to launch that idea. But don't take my word for it:

Of course, even just submitting in the contest is a good way to get the attention of various investors.

Generally, the coordination of care in the United States is one of the greatest weaknesses in the system. Doctors here in the U.S. are generally well educated and held to high standards. As long as a doctor has a good understanding of your situation and has taken responsibility for your care, the U.S. healthcare system provides excellent care, on par with any other national system. The problem comes when a healthcare transition occurs, where a different doctor takes responsibility without necessarily getting all the needed information and sometimes without knowing that they are "on the hook" for care. Healthcare in the United States is coordinated via fax machines, and coordination for payment, which is sometimes associated with transitions of care, frequently uses ancient EDI standards. When this coordination fails things turn into a kind of communication comedy, which really would be quite funny except that there are sometimes tragic consequences. It actually helps to have a somewhat morbid sense of humor working in healthcare, since laughter, even inappropriate and macabre laughter, can help to manage the stress and pressure inherent in this high-stakes environment.

There are new standards and technologies available for the coordination of care during transitions that ONC is specifically encouraging in this contest, including the Direct Project, which is of course a favorite of mine (I am a sometimes-developer on the project).

These new technologies allow you rethink the basic assumptions in healthcare coordination, (i.e. Direct is basically "email that doctors can use without breaking the rules") and should enable teams without extensive health IT experience to do something truly innovative.

More importantly, Partnership for Patients and ONC are providing specific guidance about content. Partnership for Patients is an HHS program that "partners" with hospitals and clinics that have committed to proactively reduce patient error and complications. The Partnership has very specific goals: "To reduce preventable injuries in hospitals by 40 percent and cut hospital readmission by 20 percent in the next three years by targeting those return trips to the hospitals that are avoidable." This contest is only a small part of how they hope to achieve those goals.

CMS has released a patient checklist for hospital discharge, and the contents must be incorporated into winning contest submissions. But I can tell you from previous judging experience, thinking that "incorporate" = "regurgitate" is not a winning strategy. Instead, try to get your head around the complex hospital discharge phenomenon. PubMed is your friend. In my experience doing something amazing with one of the checklist items would be a better strategy then doing something derivative with all of the items. Doing something amazing with all of the items on the checklist would obviously win, but it may be impossible to do that well. (I'd be happy to be proven wrong on this.)

My day job is with the Cautious Patient Foundation (CPF). They hire me to write software to improve the communication between doctors and patients, which is part of their mission to provide software tools that enable patients to help reduce their own medical errors by being fully engaged, educated and aware. If the healthcare system were a highway the Cautious Patient Foundation would be a defensive driving course. CPF has a grant program that they use to fund innovations that impact patient safety. Contest participants are encouraged to submit their ideas to the Cautious Patient Foundation grant process. We are interested in innovative ideas that impact patient safety generally, not just in transitions of care. So if you have a winning patient safety concept that does not fit into this particular contest, we might be interested.

Moreover, there is nothing to stop you from submitting the same technology to one of theother Health 2.0 contests or even to another joint ONC/Health 2.0 contest. Many of these contests could easily be won by an application that does something with a patient safety impact. If you have a great idea for improving healthcare with software, just wait ... there will eventually be a contest asking for just the kind of innovation you have.

All of this is to say: There is some real money in these developer contests. Traditional health IT experts who feel trapped can use contests to fund and promote their non-traditional ideas. Developers who are new to the field of health IT can use the contests as a way to break in and get attention for their ideas. Great ideas that improve the healthcare system can get traction, funding and attention. If you can get your great idea working and you submit it to one of these developers contests you can get some feedback.

Maybe your idea actually sucks, but if you knew why, then you could come up with a new idea that really would be great. In any case, it is pretty hard for a developer to just lose by participating in these contests. Worst case scenario is that is ends up being a free education. Who knows? You might be an important part of another developer's free education.

No matter what, working on software that addresses patient safety issues is one of the few ways that a software developer can impact quality of life rather than convenience of life. These contests, especially the in-person code-a-thons, are fun enough that you might even find yourself forgetting that you are changing the world.

Meaningful Use and Beyond: A Guide for IT Staff in Health Care — Meaningful Use underlies a major federal incentives program for medical offices and hospitals that pays doctors and clinicians to move to electronic health records (EHR). This book is a rosetta stone for the IT implementer who wants to help organizations harness EHR systems.


Related:


September 16 2011

Putting innovation and tech to work against breast cancer

GE challengeIn April, Jeff Hammerbacher looked around Silicon Valley and made an observation to Businessweek that spread like wildfire: "The best minds of my generation are thinking about how to make people click ads," he said. "That sucks."

With the launch of General Electric's Healthymagination Cancer Challenge, the best and brightest technical minds have been called to work on something that matters: fight breast cancer.

The open innovation challenge was launched yesterday in New York City. GE and a number of venture capitalists are putting $100 million behind the challenge as part of GE's larger billion-dollar commitment to fund cancer-related R&D over the next five years.

Tim O'Reilly moderated two panels during the launch yesterday that highlighted some of the challenges and opportunities in the fight against breast cancer. Video of the event is embedded below.

[Disclosure: Tim O'Reilly will be one of the judges in GE's investment challenge.]

A moment of convergence

While the Internet is changing healthcare, what happens next is immensely important to everyone.

"I turned to healthcare partly because I saw an immense hunger among the developers that I work with to start working on stuff that matters," said O'Reilly at the launch.

O'Reilly noted the combination of medical data and data tools is enticing to developers. "As we've been hearing, there are new diagnostic technologies that are producing massive amounts of data," he said. "And of course, crunching data and extracting meaning is something that the big Silicon Valley companies have worked to perfect. We're at a moment of convergence and I'm fascinated by what is happening as these two worlds come together."

Bob Kocher of VenRock cited three reasons why "cancer won't know what happened when we've finished":

  1. New data — "We are great at making sense out of data and we're getting better every day," Kocher said.
  2. New demand — "Thank God screening will be available to all Americans," he said. "Hopefully, we will reach them where they are, with technologies that are more sensitive, more reliable, more pleasant, and making it more pervasive. We'll catch cancer at a point where we can absolutely take care of it."
  3. New economics — "Our health system economics are changing in ways that I think actually will foster much better treatment of patients, more reliably, with drugs that work better with fewer side effects," Kocher said.

What's required for innovation? Beth Comstock, senior VP and CMO at General Electric, said that a global survey by GE returned three simple truths for what's needed: collaboration, the role of the creative individual, and profit with a purpose. When it comes to the latter, "there's nothing more relevant than healthcare."

Applying that care to where it's needed most was a point of agreement for all of the panelists. "Open innovation in health doesn't matter if we can't get it to the patient and deliver it," said O'Reilly.

Atul Gawande has written about lowering medical costs by giving the neediest patients better care with a process called "hotspotting." Give the success of the approach in Camden, New Jersey, similar data-driven measures for providing healthcare in communities may be in our future.

Personalized medicine and molecular biology

Personalized medicine, driven by the ongoing discoveries in molecular biology, is "just what's next," said GE chairman and CEO Jeffrey Immelt. To take on the immense challenge that breast cancer presents, it will require systems thinking to address both outcomes and cost over time.

Immelt is not the only executive bullish on the potential of new technologies to help breast cancer patients. "We'll see more innovation in the next five years in cancer research and development than we saw in the last 50 years," said Ron Andrews, CEO of Clarient.

Innovation needs partnership to scale, however, said Sue Siegel a general partner at Mohr Davidow. The ideas submitted to the GE challenge need to be open and scalable to have the biggest impact, she noted.

Siegel posited that the road to a cure will be through molecular diagnostics. The challenge is that less than 1% of spending is on diagnostics, said Siegel, in the context of a healthcare industry that represents $2.6 trillion of the U.S. GDP — and yet most clinical decisions are based on diagnostics. In that context, diagnostic data appears to be a significantly undervalued resource.

"We need to value the diagnostic data as much as we do the therapies," said Risa Stack, a general partner at Kleiner Perkins Caufield & Byers. Stack said that they're thinking of a "diagnostics registry," a website that would enable people to know the different kinds of diagnostics available to patients.

"The time for personalized healthcare is now in oncology, said Greg Plowman, senior vice president for research at ImClone Systems, a subsidiary of Eli Lilly. "What's best for the patient is knowing that this drug is best for them," he said. According to Plowman, Eli Lilly is investing heavily in new diagnostics and looking for partnerships.

Susan Love of UCLA noted that screening for breast cancer, however, is still one size fits all. Breast cancer for young women is more aggressive and less likely to be picked up by traditional mechanisms, she said. "We need to focus on screening — not just personalized medicine at the end. Do it at the beginning."


Obstacles to innovation in healthcare

For entrepreneurs, there are always obstacles to building any company. It is, however, 100 times harder to be an entrepreneur inside health and wellness, said Steve Krein, co-founder of StartUp Health. "Everything is stacked against you," he said, from regulations to the patient feedback cycle.

Krein sees an "incredible amount" of people who are interested in the healthcare space but are frustrated by barriers. He emphasized that there are important opportunities for entrepreneurs to seize, particularly in the "gap" between the Internet and a doctor's visit, where they're left alone with a search box.

There are two things that take too long, said Kocher: regulations and reimbursement. In his view, the Food and Drug Administration needs to get involved earlier to help startups navigate the system.

In a larger sense, O'Reilly suggested the healthcare industry apply a lesson from Google's playbook. The search giant solved a problem that Sam Wannamaker famously articulated about advertising: he knew half of ads work but not which half. By applying data-driven approaches to healthcare, there might be huge potential to know more about what's working and create feedback loops that allow physicians and regulators to iterate quickly.

We now have the ability to move to much more real-time monitoring of what works, O'Reilly said, suggesting that "regulations need to move from a stack of paper to a set of processes for monitoring in real-time."

That could become particularly important if more health data was voluntarily introduced into the startup ecosystem through the Blue Button, a technical mechanism for enabling citizens to download their personal health information and take it with them. "Once patients have their own data, they're much more willing to share than the law will allow," said O'Reilly, but they "will tend to share if they think it will solve their health crisis."

As entrepreneurs consider how to innovate, O'Reilly said, it's important to recognize that the "change in business model is often as important as the change in technology."

A mobile revolution is coming to healthcare

After the forum, O'Reilly tweeted that healthcare is due for a "UI revolution." He cited a statistic that 1 in 5 physicians now owns an iPad and that by 2014, virtually all physicians are expected to have a tablet.

Over the past five years, said MedHelp CEO John de Souza during the launch event, monthly visitors to MedHelp.com have grown from 1 million to 12 million, and mobile visitors have grown from 3% to 30% of that traffic.

The "mobile phone is becoming a health hub," said Souza, with the ability to transmit and collect data. The two big impediments to growth are manual entry and data monitoring. Data needs to be automatically collected and sent on to someone else looking at data through tele-monitoring, where they can analyze it and inform a physician.

Krein cited the iPad as one of the most transformative technologies in healthcare because the simplified user experience has opened the door to different thinking. Krein said that when they opened up StartupAcademy and 125 entrepreneurs applied, half of them had some element of mobile health in the proposals that included the use of an iOS or Android device.


The future of healthcare is social

As reported elsewhere, social media is changing healthcare by connecting patients to information and, increasingly, each other.

As the panelists acknowledged, advocates have built huge communities and created seminal change both online and offline.

There is an opportunity for people to share actual outcomes, said O'Reilly. Given that people are using the Internet to share that information, it becomes a useful source for patients and physicians. "We do see people looking for answers in the Internet," he said. "The key thing in patient's education is teaching people how to ask better questions."

Love went beyond peer-to-peer healthcare: we can really educate the public not just about the treatment but about the research too, she said, including how to get it done and how to participate. "That's the only way to get the cause, not just the cure."

A personal challenge

I can't claim to be unbiased about breast cancer. Both my mother and grandmother have had it and survived. Through their experiences, I learned just how many other women are affected. Breast cancer statistics are stark: about 1 in 8 women in the United States will develop invasive breast cancer over the course of their lifetime. More than 200,000 new cases of breast cancer are detected every year in the U.S. alone. Globally, breast cancer is the number one cancer for women in both the developing world and developed world, according to the World Health Organization. Hundreds of thousands of those diagnosed die.

Nancy Brinkler, the founder of the Susan G. Komen Foundation, lost her sister to breast cancer at the age of 36. We've moved from a society where breast cancer couldn't be said on television to one where billions are invested worldwide, she noted at the launch.

"We don't have the knowledge of how to defeat it but do know more about the biology," Brinkler said. While relative survival rates have improved for those who have access to early screening and treatment, "where a woman lives or how many resources she has should never determine whether she lives." To move forward "will require a bridge between science and society."

If healthcare data and the energy of innovation can be harnessed to create earlier detection and targeted therapies, more women diagnosed with breast cancer will join the millions of survivors.

July 22 2011

Preview of OSCON's health care track

The success of our health care track at the O'Reilly Open Source convention last year (which I covered in a series of blogs) called for a follow-up. This year we offer another impressive line-up. In fact, we had to turn away several interesting presenters, some of whom I am following up with for separate interviews or work projects. This year we're looking more at what you — patients, clinicians, and researchers — can do with the data you collect, while we continue our coverage of critical IT parts of the health care system.

The health care sessions are tucked away in a little-trafficked area of the Oregon Convention Center. To get to the room, you have to come down to the ground level and walk all the around, away from the registration area, to the part of the building facing the Boulevard. I'm writing this blog to encourage more OSCON attendees to take the steps there.

Open source and health care go together like alkyls and hydroxyls. Open source software offers greater standards compliance, which helps institutions exchange critical data, and gives the extremely diverse field of health providers the flexibility they need to offer the kinds of interfaces and services they want.

And open source software is starting to take its rightful place in the health care field. The people that the federal government put in charge of driving improvements in health care — the Office of the National Coordinator in the Department of Health and Human Services — know the benefits of open source well, and have instigated many such projects. OSCON highlights some of the best-known, as well as some valuable ones that most people have never heard of.

Alison Muckle and, Jason Goldwater will report on the state of open source software in health care. Under contract from the ONC, these researchers studied several systems and found they could provide the features needed by health care providers at a low cost.

Health IT at OSCON 2011 — The conjunction of open source and open data with health technology promises to improve creaking infrastructure and give greater control and engagement for patients. These topics will be explored in the health care track at OSCON (July 25-29 in Portland, Ore.)

Save 20% on registration with the code OS11RAD

The CONNECT Gateway was an existing government project that the ONC decided to make open source. It cut through the proprietary mess in health information exchanges that has been holding doctors back from sharing information on patients for years. Instead of individual translations from one proprietary record system to another (leading to N2 translation procedures among N systems), CONNECT provided a standard protocol that vendors are adopting.

Drawing on the expertise in open source communities demonstrated by Brian Behlendorf (of Apache fame) and David Riley, the ONC built a robust community around CONNECT, including both commercial entities and individuals who care about health care. Behlendorf and Riley spun out the non-profit Alembic Foundation to coordinate further community efforts, and Riley is coming to the health care track to describe where the project is going.

Although CONNECT is going to turn more and more in health information exchanges, it is SOAP-based and heavyweight for casual exchanges among small medical practices. The rural one-physician practice needs to exchange data as much as the hospitals that use CONNECT, and needs to meet the same requirements for privacy. The Direct project provides secure email and other simple channels between facilities that trust each other.

Microsoft provided an open source .NET library for creating tools that use Direct, and its many facets will be covered by Vaibhav Bhandari and Ali Emami.

As Bhandari's and Emami's talk shows, implementation is a big part of the job of making standards and open source software work. Three representatives of open source projects will discuss their collaboration on an open source health project.

Among the lesser-known beneficiaries of ONC funding is the popHealth project, run by MITRE. The vision behind this project is improving the quality of health care, which requires collecting data from each health care provider. When providers know they're being measured for quality, they do more of the right things like encouraging patients to come in for follow-up care. And when we know where we did well and not so well, we can apply resources to raise up the laggards.

So the health care reform in the stimulus bill, in calling for "meaningful use" of provider data, gives the providers incentives to send a range of data to the government, such as how many smokers and diabetics they treat. popHealth hooks into electronic health records and makes it easy to generate reports on standard measures of quality. It also provides simple Web interfaces where providers can check their data, and this encourages them to track quality themselves. Programmer Andrew Gregorowicz will speak about popHealth at OSCON. (I interviewed Gregorowicz about his presentation.)

Another intriguing presentation can be expected by David Uhlman, who covers not only the use of open source for meeting meaningful use requirements, but how providers can use open source tools to manage the data.

David Richards also covers ways to use data for planning and quality improvement, a practice generally known as clinical decision support.

Patients can collect and use data as well, as explained by Fred Trotter in his talk on the quantified self and software.

Personal health records let patients keep track of their health information, but as the recent demise of Google Health shows, it's hard to make a system that ordinary people find useful. Institutions can use the open source Indivo system to give clients access to PHRs. Its API and uses will be described in a talk by chief architect Daniel Haas. (I interviewed Haas about his presentation.)

Another key link in the chain of patient data is the increasing number of devices that measure blood pressure, glucose levels, and other vital signs. Shahid Shah explains why high-quality treatment depends on connecting these devices to health records, and interviewed Shah about his presentation.)

Charlie Quinn addresses himself to researchers trying to tame the flood of data that will be generated by meaningful use and other international sources.

Several sessions in other tracks are also related to health care:

There's so much happening this year at OSCON that I wish I were multi-threaded. (But, actually, threads are on the way out this year — didya hear? Asynchronous callbacks are in.) I hope some of you can make time, by cloning yourselves if necessary, and join us at some of the talks in this blog.



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July 07 2011

Strata Week: How much of the web is archived?

Here are a few of the data stories that caught my attention this week.

How much of the web is archived?

Researchers at Old Dominion University are trying to ascertain how much of the web has actually been archived and preserved in various databases. Scott Ainsworth, Ahmed Alsum, Hany SalahEldeen, Michele Weigle, and Michael Nelson have published a paper (PDF) with their analysis of the current state of archiving.

The researchers have studied sample URIs from DMOZ, Delicious, Bit.ly, and search engine indexes in order to measure the number of archive copies available in various public web archives. According to their findings, between 35% to 90% of URIs have at least one archived copy. That's a huge range, and when you look at DMOZ, for example, you'll find a far higher rate of archiving than you will for Bit.ly links. That's hardly surprising, of course, as DMOZ is a primary source for the Internet Archive's efforts.

More troubling, perhaps, is the poor representation of Bit.ly links in archiving. The researchers say that the reason for this isn't entirely clear. Nonetheless, we should consider: what are the implications of this as Bit.ly and other URL shorteners become increasingly utilized?

In an article in The Chronicle, Alexis Rossi from the Internet Archive points out how this project helps to shed light on the web archiving process. "People are coming to the realization that if nobody saves the Internet, their work will just be gone."

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Better healthcare data collection

The Department of Health and Human Services announced last week that it would work to improve its collection of healthcare data, specifically around the collection and reporting of race, ethnicity, sex, primary language and disability status. The department also announced that it also plans to collect health data about lesbian, gay, bisexual, and transgender populations.

Feministing says this is a big deal — and indeed, it does mark an important move to help uncover some of the disparities in healthcare that many in the LGBT community know exist:

There is a lack of data on LGBT folks, who we do know face disparities in health and access to health services. Without federal health data, it's practically impossible to direct federal government resources to focus on health inequalities. Including sexual orientation in data collection will go a long way towards showing what LGB folks face. This data will make it possible to name and quantify real world problems, and to then direct government resources towards addressing them.

The Department of Health and Human Services positions the move for better data collection as part of its efforts to help address healthcare inequality. According to HHS Secretary Kathleen Sebelius: "The first step is to make sure we are asking the right questions. Sound data collection takes careful planning to ensure that accurate and actionable data is being recorded."

Twitter acquires Backtype for better data analytics

Analytics company Backtype announced this week that it had been acquired by Twitter. Backtype offers its customers the ability to track their social media impact across the web. Using BackType, you could get an RSS feed of all the comments posted across the blogosphere that were signed with a certain website's URL, providing a powerful tool by which you could track people's commentary and participation online.

With the acquisition, Backtype says that it will bring its analytics platform to help develop "tools for Twitter's publisher partners." No doubt, these sorts of analytics are a key piece of Twitter's value proposition, and it's becoming increasingly clear that the company is opting to bring these sorts of tools in-house, rather than relying on third-party vendors to supply the analytics tools through which people can gauge participation and interest in various pieces of content.

Got data news?

Feel free to email me.



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