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May 16 2012

How to start a successful business in health care at Health 2.0 conference

Great piles of cash are descending on entrepreneurs who develop health care apps, but that doesn't make it any easier to create a useful one that your audience will adopt. Furthermore, lowered costs and streamlined application development technique let you fashion a working prototype faster than ever, but that also reduces the time you can fumble around looking for a business model. These were some of the insights I got at Spring Fling 2012: Matchpoint Boston, put on by Health 2.0 this week.

This conference was a bit of a grab-bag, including one-on-one meetings between entrepreneurs and their potential funders and customers, keynotes and panels by health care experts, round-table discussions among peers, and lightning-talk demos. I think the hallway track was the most potent part of this conference, and it was probably planned that way. The variety at the conference mirrors the work of Health 2.0 itself, which includes local chapters, challenges, an influential blog, and partnerships with a range of organizations. Overall, I appreciated the chance to get a snapshot of a critical industry searching for ways to make a positive difference in the world while capitalizing on ways to cut down on the blatant waste and mismanagement that bedevil the multi-trillion-dollar health care field.

Let's look, for instance, at the benefits of faster development time. Health IT companies go through fairly standard early stages (idea, prototype, incubator, venture capital funding) but cochairs Indu Subaiya and Matthew Holt showed slides demonstrating that modern techniques can leave companies in the red for less time and accelerate earnings. On the other hand, Jonathan Bush of athenahealth gave a keynote listing bits of advice for company founders and admitting that his own company had made significant errors that required time to recover from. Does the fast pace of modern development leave less room for company heads to make the inevitable mistakes?

I also heard Margaret Laws, director of the California HealthCare Foundation's Innovations Fund, warn that most of the current applications being developed for health care aim to salve common concerns among doctors or patients but don't address what she calls the "crisis points" in health care. Brad Fluegel of Health Evolution Partners observed that, with the flood of new entrepreneurs in health IT, a lot of old ideas are being recycled without adequate attention to why they failed before.

I'm afraid this blog is coming out too negative, focusing on the dour and the dire, but I do believe that health IT needs to acknowledge its risks in order to avoid squandering the money and attention it's getting, and on the positive side to reap the benefits of this incredibly fertile moment of possibilities in health care. Truly, there's a lot to celebrate in health IT as well. Here are some of the fascinating start-ups I saw at the show:

  • hellohealth aims at that vast area of health care planning and administration that cries out for efficiency improvements--the area where we could do the most good by cutting costs without cutting back on effective patient care. Presenter Shahid Shah described the company as the intersection of patient management with revenue cycle management. They plan to help physicians manage appointments and follow-ups better, and rationalize the whole patient experience.

  • hellohealth will offer portals for patients as well. They're unique, so far as I know, in charging patients for certain features.

  • Corey Booker demo'd onPulse, which aims to bring together doctors with groups of patients, and patients with groups of the doctors treating them. For instance, when a doctor finds an online article of interest to diabetics, she can share it with all the patients in her practice suffering from diabetes. onPulse also makes it easier for a doctor to draw in others who are treating the same patient. The information built up about their interactions can be preserved for billing.

    onPulse overlaps in several respects with HealthTap, a doctor-patient site that I've covered several times and for which an onPulse staffer expressed admiration. But HealthTap leaves discussions out in the open, whereas onPulse connects doctors and patients in private.

  • HealthPasskey.com is another one of these patient/doctor services with a patient portal. It allows doctors to upload continuity of care documents in the standard CCD format to the patient's site, and supports various services such as making appointments.

    A couple weeks ago I reported a controversy over hospitals' claims that they couldn't share patient records with the patients. Check out the innovative services I've just highlighted here as a context for judging whether the technical and legal challenges for hospitals are really too daunting. I recognize that each of the sites I've described pick off particular pieces of the EHR problem and that opening up the whole kit and kaboodle is a larger task, but these sites still prove that all the capabilities are in place for institutions willing to exploit them.

  • GlobalMed has recently released a suitcase-sized box that contains all the tools required to do a standard medical exam. This allows traveling nurse practitioners or other licensed personnel to do a quick check-up at a patient's location without requiring a doctor or a trip to the clinic. Images can also be taken. Everything gets uploaded to a site where a doctor can do an assessment and mark up records later. The suitcase weighs about 30 pounds, rolls on wheels, and costs about $30,000 (price to come down if they start manufacturing in high quantities).

  • SwipeSense won Health 2.0's 100 Day Innovation Challenge. They make a simple device that hospital staff can wear on their belts and wipe their hands on. This may not be as good as washing your hands, but takes advantage of people's natural behavior and reduces the chance of infections. It also picks up when someone is using the device and creates reports about compliance. SwipeSense is being tested at the Rush University Medical Center.

  • Thryve, one of several apps that helps you track your food intake and make better choices, won the highest audience approval at Thursday's Launch! demos.

  • Winner of last weekend's developer challenge was No Sleep Kills, an app that aims to reduce accidents related to sleep deprivation (I need a corresponding app to guard against errors from sleep-deprived blogging). You can enter information on your recent sleep patterns and get back a warning not to drive.

It's worth noting that the last item in that list, No Sleep Kills, draws information from Health and Human Services's Healthy People site. This raises the final issue I want to bring up in regard to the Spring Fling. Sophisticated developers know their work depends heavily on data about public health and on groups of patients. HHS has actually just released another major trove of public health statistics. Our collective knowledge of who needs help, what works, and who best delivers the care would be immensely enhanced if doctors and institutions who currently guard their data would be willing to open it up in aggregate, non-identifiable form. I recently promoted this ideal in coverage of Sage Congress.

In the entirely laudable drive to monetize improvements in health care, I would like the health IT field to choose solutions that open up data rather than keep it proprietary. One of the biggest problems with health care, in this age of big data and incredibly sophisticated statistical tools, is our tragedy of the anti-commons where each institution seeks to gain competitive advantage through hoarding its data. They don't necessarily use their own data in socially beneficial ways, either (they're more interested in ratcheting up opportunities for marketing expensive care). We need collective sources of data in order to make the most of innovation.

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

January 05 2012

Epatients: The hackers of the healthcare world

I help build open source software tools that patients can use to have greater control and influence over their own healthcare (like the Direct Project and Your Doctors Advice). As as result, I've become quite familiar with other tools that do the same sorts of things. There is a community of patients who are deeply interested in the ways in which they can become more engaged and how they can specifically use technology to achieve this. This community calls themselves epatients. The epatient community asked me to write a short collection of resources for "becoming an epatient."

The "e" in epatient is intentionally obscure. The initial assumption is that the "e" stands for "electronic," as it does in "email." But in fact, the "e" stands for "engaged" or "empowered." Nonetheless, reference to email is intentional: The epatient community recognizes that leveraging data is a critical part of empowering a person who happens to be sick. Patients must be "electronic" to become fully "engaged." I think of epatients as the healthcare equivalent of makers and hackers. More importantly, they are the people I have in mind when I write software.

Engaged patients get better healthcare. Not just a little bit better. Much better. This is not a thesis I am prepared to defend here, except to drop a link to the Journal of Participatory Medicine, which is a good resource for those seeking a full chronicle of this engaged effect (the benefits of engagement have been documented in the healthcare literature for years).

Let's go over some simple concepts that the rest of my epatient advice and resources are based on:

  • Your doctors are probably not managing your healthcare information. You should assume it is your responsibility. Otherwise, the people involved in your treatment process will often presume that this information simply does not exist.
  • Other patients, with similar conditions to yours, can have better information about your health problem than your doctors have.
  • Like the highway system, the healthcare system is generally beneficial, but there are dangers, and you need to learn to avoid them.

And here are two things you should keep in mind:

  • Whenever I say "patient," I actually mean "the patient/caregiver team." Often, the patient will not have the energy to do what is necessary to be fully engaged. It is critical that when the patient cannot be an epatient, that at least the patient's team be an epatient proxy.
  • In regard to the "better information" I mentioned above, I don't mean that your doctor is typically wrong and another patient is typically right about your diagnosis or treatment options. While that does happen on occasion, it is not the norm. Another patient's information is "better" because your doctor typically does not have the visceral experience of being a patient. Your doctor doesn't understand which lotion can make all of the difference or what position might let you get some sleep after a rough procedure. There is simply no substitute for experience. Sometimes that experience can make your life a little easier, and sometimes it can help you get the right treatments that literally will save your life. (This is the gist of epatient Dave deBronkart's story.)

The first thing an epatient needs to do is find the right epatient community. For any common illness or group of symptoms, there is a community of people who are already connecting with each other over the Internet. For people with a recent cancer diagnosis ACOR is probably the right place to start. This is one of the oldest, largest and most active epatient communities. Sometimes, the tools that a particular community of epatients choose might be a little old school — things like traditional forums, or even list-serves. Do not judge a community by its adoption of technology, judge it by its activity level.

There are efforts to create technology solutions that are specifically designed to enable patient communities. For a good example, check out PatientsLikeMe, which is representative of patient communities drifting more toward "patient social media." I am happy to say that epatient tool makers like me are coming up with cool stuff constantly. But the mature epatient is not impressed by new and shiny. Remember, it is the relationships and insights that matter here, not the technology. Whenever possible, you want the right information delivered over the wrong technology medium, rather than the other way around.

For any serious common healthcare condition, there are probably several different communities of patients online that you can meet with. For common conditions, you might also be able to find a specific meetup in your area, or at least some kind of epatient meetup. If you have a rare disease, you might have trouble finding local resources, and you might only have one or two online communities to choose from. But for rare diseases, the online patient community as a whole is typically better informed than the average primary care physician on a particular condition. Sometimes a physician might not understand or recommend treatment options that are offered outside their local healthcare community, an issue that can be compounded when they are unfamiliar with a particular type of diagnosis. It is even more critical for rare disease patients or caregivers to find a patient community and listen to them. For rare diseases and conditions, it is critical to understand what treatment options are offered in other areas and to be fully informed regarding sham clinics that often operate in under-regulated areas.

How do you know you've found the right community? Here's a good rule of thumb: If you can't get a real response to a simple health question from the community within 24 hours, you should probably move on if there are other options. Healthy epatient communities are vibrant and alive.

You should also consider joining the Society for Participatory Medicine (SPM). The mailing list for the SPM is one of the most important cross-condition meeting places for epatients.

If you are interested in the technology side, also pay attention to Health 2.0 (#health20), which has a Patients 2.0 (#patients20) community that is concerned with the "electronic" part of epatient. Generally, I find that Health 2.0 is the right place to find out-of-the-box thinking on healthcare information systems, especially those offered directly to consumers. I go there to get the down-low on my competitors and to find collaborators. Matthew Holt from Health 2.0 cross pollinates the healthcare blog, which is also worth adding to your RSS reader.

The cross-disease epatient community uses Twitter more than Facebook or Google+ (for the time being), and the #epatient hashtag is your friend. I also recommend following @epatientdave, @reginaholliday, and @hhask as good starter accounts. If you care about the tech aspects of epatients, then check out @NateOsit or myself (@fredtrotter). And if you're interested in the activist portion of the epatient community, then look at the Occupy Healthcare roster.

Once your healthcare information gets past a certain basic level of complexity, it becomes important that you have a personal health record (PHR). Your doctors should, eventually, be able to update your PHR. That means you need a PHR that supports the Direct Project. Right now, that is a short list, with Microsoft's HealthVault at the top. As a FOSS advocate, that is not an endorsement I make lightly, but Microsoft's health IT team has been surprisingly supportive of open source (i.e. patient empowering) technologies and they have relatively mature Direct support. Indivo is pretty much the only one to consider if you want to run your own PHR (it's open source), but its Direct support is lagging. Something you should keep in mind: If you have only one doctor at a time, you do not need to obsess about the coordination of your own healthcare information; if you have more than one doctor, you do. You can manage this information with a PHR, or a notebook, or even an infographic. What matters is that you need to do it, and do it carefully.

Some of the people in the Quantified Self movement are patients who are trying to use data about themselves to improve their health. If that interests you (if you have a chronic condition, it should), then take a look at the Quantified Self website.

There are two types of patients: those who are in crisis mode and those who are in maintenance mode. If you are in crisis mode, and you feel like your whole world has been turned upside down, then I recommend you read Dr. Carolyn Oliver's book "Cautious Care: A Guide for patients." The newest edition of this book is also available as a series of free PDF downloads from the Cautious Patient Foundation website. Here are direct links to the hospital part and the outpatient part. Dr. Oliver's book is like a "defensive driving crash course" for the healthcare system. If you are going to be staying up all night at the hospital (as a caregiver or a patient), and you have no idea what you should be paying attention to, this is the book that you should be reading. (Disclosure: I work for Dr. Oliver at the Cautious Patient Foundation.)

If you are in maintenance mode, you should still start with Dr. Oliver's books, but you can also extend your reading to the classics of the epatient movement. That process should always begin with the e-patient white paper, and I also recommend the book "Laugh, Sing, and Eat Like a Pig" for ethos purposes. Go to e-patients.net and click "categories" to find the content on that blog that seems relevant to you.

If you are well, consider spending some time with these resources. When you become sick you do not want to be learning how this stuff works. You will probably ignore this advice, and that's fine. Just try to remember that this advice is here when you need it. Also, remember that these are not instructions for how to handle your illness; they're instructions for finding the instructions on how to handle your illness.

If you are newly sick, then what I have written here will sound overwhelming. You are tired, scared and confused (and you don't need some arrogant geek telling you that you need to use technology to look over your doctor's shoulder). Recognize that you will not have the capacity to bring your intellect to bear on this the way you could when you were healthy. It is very tempting to just check out and trust that the healthcare system is going to take good care of you. But please trust me on this: That's a bad idea. The default settings on the healthcare system really suck. Your doctors will provide you with options, but they do not have the right perspective to help you make the right choices. Patients often ask their doctors, "What would you do if you were me?" The very, very best doctors reply, "But I am not you." What you need to find are other people who share your values, who are living with the consequences of having made the choices that you are facing. I say this with both a deep sense of pride and a great deal of humility: My spiritual predecessors (health geeks) have made sure that the Internet can provide you with connections to these people.

The Internet will make it easier to connect, which is awesome. If you cannot summon the strength to do this, fine — entrust someone you love with the task of connecting for you. I truly believe that it is impossible to be an epatient alone. Moreover, I believe that it is impossible not to be an epatient if you have shared your burden with even one other patient.

For those who need encouragement with their ongoing efforts to connect to others with the same suffering, I leave you with some video happiness. Be sure to watch the whole thing:

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:

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 30 2011

Four short links: 30 September 2011

  1. Fingerprinting Cameras Through Sensor Noise -- using the pattern of noise consistent between images taken from the same camera to uniquely identify the device. (via Pete Warden)
  2. Stopping Bots with Hashes and Honeypots (Ned Batchelder) -- solid techniques for preventing spambots. (via Andy Baio)
  3. Most Popular Infographics Generalized (Flowing Data) -- it's only funny because it's true.
  4. London Hospital to Deploy Open Source Record System -- hot on the heels of the NHS canning a failed expensive development of electronic health records. (via Glyn Moody)

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.

June 12 2011

How a Health 2.0 code-a-thon works

I had a blast today at my first Health 2.0 code-a-thon. These are held regularly in different cities; today's was in Washington, DC. Another one will be held on the weekend following (please pardon the plug) O'Reilly's Open Source Convention. Today I kibbetzed and occasionally probed teams' decisions with questions without trying to code (or get in the way), and this participation was completely consistent with the wide range of things people were doing. A code-a-thon is a place where people with data in search of ideas meet people with ideas in search of data.

Health 2.0 leadership and staff: Matthew Holt, Lizzie Dunklee, and Shelle Hyde

Health 2.0 leadership and staff: Matthew Holt, Lizzie Dunklee, and Shelle Hyde

At the furthest corner of the open space generously given to us by Kaiser Permanente Center for Total Health, one team of three to four people sullenly huddled around a table and pounded their laptops for hours, never saying a word at any time I was there to notice. Two meters away from them sat a clump of voluble health care developers producing nothing concrete at all, but visibly enjoying their conversations around the general theme of "what seniors want."

I talked to two coding teams about their projects. The first was taking data generated by an agency in Washington, DC about HIV-positive residents and trying to produce visualizations of important trends and variations. The other took records from the Department of Veterans Affairs' Blue Button site and mashed them up with information available about medications from the National Cancer Institute's thesaurus through their LexEVS tool. The goal was simply to let a veteran position the mouse over the name of the medication in the Blue Button output and have a description of that medication pop up.

Choice of technology is a central task in any programming project. At a code-a-thon, agile soon morphs into quick and dirty. The HIV team had data in spreadsheet format, so the leader tried at first just to stuff it into a Google Doc and use Google charts to make the visualizations. The Blue Button project leader managed to load the plaintext format into an XML schema, and planned to use Greasemonkey to add the popup. This choice was based on privacy concerns: he wanted to confine data to the screen of the veteran, and didn't want anything that could potentially send the veteran's information to a remote system.

Both projects started with three coders, but the HIV one soon attracted another group of three who worked intensively on it through lunch and during the whole afternoon. Although the HIV project ended up with two or three times the number of coders as the Blue Button project, the HIV team remained two separately, loosely coordinating teams. This was even reflected by their positions at opposite sides of the room.

I soon noticed two other handicaps the HIV team(s) had to grapple with. The first consisted of problems with the input data, starting with from the date format (it was simply strings such as 6/11/2011, not a true date in the format Google Docs supports). A second handicap was absolutely classic and has derailed many projects of a bigger scale than this one: the team wasn't sure what data to select and how to visualize it. Confusion reined over which demographics would be of most interest to the agency who gave them the data, and how to handle complex relationships such as different risk factors for getting HIV. The project leader was familiar with the agency and probably could have enunciated a vision, but for some reason it was hard to get across to the teams.

Turn-out was low for this hack-a-thon. Attendance shrank to about 15 for the presentations of projects. But the tension built as six o'clock approached. At the last minute, I was asked to be one of the judges.

There's a happy ending to all this: every team overcome its essential difficulties and annoying blocks.

  • Aether, the quietly intense team whose activity was totally opaque to me, pulled off a stunningly deft feat of programming. They are trying to improve patient compliance by using SMS text messaging to help the patient stay in contact with the physician and remain conscious of his own role in his treatment. A patient registers his cell phone number (or is registered by his doctor) and can then enter relevant information, such as a daily glucose reading, which the tool displays in a graph. Next steps includes adding notifications so the system can remind patients to participate or give them advice. The ability to compare physicians is also a goal. Aether won first prize today.

  • The Blue Button team achieved its basic goal of mashing up the NCI thesaurus with medications on a veteran's display. The output is crude (a lot of XML tags come out in the display, and the inserted text currently overlays the screen instead of being a hover-over), but the proof of concept succeeded. This was a big achievement for two coders with self-described rusty skills. Next steps include hooking up with other data sets and augmenting other fields such as allergies. This team won second prize today.

  • SeeDC, the HIV team, succeeded in curating their data--which they estimated to take up half their time today--and ultimately stored it in a relational database while using the project leader's favorite platform (Django) to generate visualizations. Another team member stuck to Google Charts and also produced some very nice displays. One of the team's goals is to make it easier for their agency not only to view the implications of their data but to generate reports for higher-level agencies. They also plan to work with the agency to help them collect and store cleaner data. This includes moving from paper forms to the web or a mobile interface.

  • SeNeSo (Senior Network Social) aims to improve the elderly's social life and their enjoyment of available activities. The proposed platform (no coding was done) includes a calendar, notifications of events, and event invitations. The platform could be integrated with some larger social networking site like Facebook. I could tell, by watching the team's discussions throughout the day, that these helped the team dramatically focus and scale down their goals to something achievable and clearly of value.

  • A final project used Google Refine to filter, sort, and check data from FDA product labels (mashed up with some privately collected data) on drugs submitted by firms.

For the Health 2.0 organization, the code-a-thons form a sequence leading up to an annual San Francisco event. The points I want to draw from this event are that 1) joining a code-a-thon for a day is lots of fun, 2) you can meet really fascinating and talented people at code-a-thons, 3) great ideas can really take off at these events, and 4) you don't have to domain-specific knowledge (health care in this instance) or even be a professional developer to contribute.

How a Health 2.0 code-a-thon works

I had a blast today at my first Health 2.0 code-a-thon. These are held regularly in different cities; today's was in Washington, DC. Another one will be held on the weekend following (please pardon the plug) O'Reilly's Open Source Convention. Today I kibbetzed and occasionally probed teams' decisions with questions without trying to code (or get in the way), and this participation was completely consistent with the wide range of things people were doing. A code-a-thon is a place where people with data in search of ideas meet people with ideas in search of data.

Health 2.0 leadership and staff: Matthew Holt, Lizzie Dunklee, and Shelle Hyde

Health 2.0 leadership and staff: Matthew Holt, Lizzie Dunklee, and Shelle Hyde

At the furthest corner of the open space generously given to us by Kaiser Permanente Center for Total Health, one team of three to four people sullenly huddled around a table and pounded their laptops for hours, never saying a word at any time I was there to notice. Two meters away from them sat a clump of voluble health care developers producing nothing concrete at all, but visibly enjoying their conversations around the general theme of "what seniors want."

Cristian Lui at opening session

Cristian Lui at opening session

I talked to two coding teams about their projects. The first was taking data generated by an agency in Washington, DC about HIV-positive residents and trying to produce visualizations of important trends and variations. The other took records from the Department of Veterans Affairs' Blue Button site and mashed them up with information available about medications from the National Cancer Institute's thesaurus through their LexEVS tool. The goal was simply to let a veteran position the mouse over the name of the medication in the Blue Button output and have a description of that medication pop up.

Choice of technology is a central task in any programming project. At a code-a-thon, agile soon morphs into quick and dirty. The HIV team had data in spreadsheet format, so the leader tried at first just to stuff it into a Google Doc and use Google charts to make the visualizations. The Blue Button project leader managed to load the plaintext format into an XML schema, and planned to use Greasemonkey to add the popup. This choice was based on privacy concerns: he wanted to confine data to the screen of the veteran, and didn't want anything that could potentially send the veteran's information to a remote system.

Both projects started with three coders, but the HIV one soon attracted another group of three who worked intensively on it through lunch and during the whole afternoon. Although the HIV project ended up with two or three times the number of coders as the Blue Button project, the HIV team remained two separately, loosely coordinating teams. This was even reflected by their positions at opposite sides of the room.

I soon noticed two other handicaps the HIV team(s) had to grapple with. The first consisted of problems with the input data, starting with from the date format (it was simply strings such as 6/11/2011, not a true date in the format Google Docs supports). A second handicap was absolutely classic and has derailed many projects of a bigger scale than this one: the team wasn't sure what data to select and how to visualize it. Confusion reined over which demographics would be of most interest to the agency who gave them the data, and how to handle complex relationships such as different risk factors for getting HIV. The project leader was familiar with the agency and probably could have enunciated a vision, but for some reason it was hard to get across to the teams.

HIV team

HIV team

Turn-out was low for this hack-a-thon. Attendance shrank to about 15 for the presentations of projects. But the tension built as six o'clock approached. At the last minute, I was asked to be one of the judges.

There's a happy ending to all this: every team overcome its essential difficulties and annoying blocks.

  • Aether, the quietly intense team whose activity was totally opaque to me, pulled off a stunningly deft feat of programming. They are trying to improve patient compliance by using SMS text messaging to help the patient stay in contact with the physician and remain conscious of his own role in his treatment. A patient registers his cell phone number (or is registered by his doctor) and can then enter relevant information, such as a daily glucose reading, which the tool displays in a graph. Next steps includes adding notifications so the system can remind patients to participate or give them advice. The ability to compare physicians is also a goal. Aether won first prize today.

  • The Blue Button team achieved its basic goal of mashing up the NCI thesaurus with medications on a veteran's display. The output is crude (a lot of XML tags come out in the display, and the inserted text currently overlays the screen instead of being a hover-over), but the proof of concept succeeded. This was a big achievement for two coders with self-described rusty skills. Next steps include hooking up with other data sets and augmenting other fields such as allergies. This team won second prize today.

  • SeeDC, the HIV team, succeeded in curating their data--which they estimated to take up half their time today--and ultimately stored it in a relational database while using the project leader's favorite platform (Django) to generate visualizations. Another team member stuck to Google Charts and also produced some very nice displays. One of the team's goals is to make it easier for their agency not only to view the implications of their data but to generate reports for higher-level agencies. They also plan to work with the agency to help them collect and store cleaner data. This includes moving from paper forms to the web or a mobile interface.

  • SeNeSo (Senior Network Social) aims to improve the elderly's social life and their enjoyment of available activities. The proposed platform (no coding was done) includes a calendar, notifications of events, and event invitations. The platform could be integrated with some larger social networking site like Facebook. I could tell, by watching the team's discussions throughout the day, that these helped the team dramatically focus and scale down their goals to something achievable and clearly of value.

  • A final project used Google Refine to filter, sort, and check data from FDA product labels (mashed up with some privately collected data) on drugs submitted by firms.

For the Health 2.0 organization, the code-a-thons form a sequence leading up to an annual San Francisco event. The points I want to draw from this event are that 1) joining a code-a-thon for a day is lots of fun, 2) you can meet really fascinating and talented people at code-a-thons, 3) great ideas can really take off at these events, and 4) you don't have to have domain-specific knowledge (health care in this instance) or even be a professional developer to contribute.

How a Health 2.0 code-a-thon works

I had a blast today at my first Health 2.0 code-a-thon. These are held regularly in different cities; today's was in Washington, DC. Another one will be held on the weekend following (please pardon the plug) O'Reilly's Open Source Convention. Today I kibbetzed and occasionally probed teams' decisions with questions without trying to code (or get in the way), and this participation was completely consistent with the wide range of things people were doing. A code-a-thon is a place where people with data in search of ideas meet people with ideas in search of data.

At the furthest corner of the open space generously given to us by Kaiser Permanente Center for Total Health, one team of three to four people sullenly huddled around a table and pounded their laptops for hours, never saying a word at any time I was there to notice. Two meters away from them sat a clump of voluble health care developers producing nothing concrete at all, but visibly enjoying their conversations around the general theme of "what seniors want."

I talked to two coding teams about their projects. The first was taking data generated by an agency in Washington, DC about HIV-positive residents and trying to produce visualizations of important trends and variations. The other took records from the Department of Veterans Affairs' Blue Button site and mashed them up with information available about medications from the National Cancer Institute's thesaurus through their LexEVS tool. The goal was simply to let a veteran position the mouse over the name of the medication in the Blue Button output and have a description of that medication pop up.

Choice of technology is a central task in any programming project. At a code-a-thon, agile soon morphs into quick and dirty. The HIV team had data in spreadsheet format, so the leader tried at first just to stuff it into a Google Doc and use Google charts to make the visualizations. The Blue Button project leader managed to load the plaintext format into an XML schema, and planned to use Greasemonkey to add the popup. This choice was based on privacy concerns: he wanted to confine data to the screen of the veteran, and didn't want anything that could potentially send the veteran's information to a remote system.

Both projects started with three coders, but the HIV one soon attracted another group of three who worked intensively on it through lunch and during the whole afternoon. Although the HIV project ended up with two or three times the number of coders as the Blue Button project, the HIV team remained two separately, loosely coordinating teams. This was even reflected by their positions at opposite sides of the room.

I soon noticed two other handicaps the HIV team(s) had to grapple with. The first consisted of problems with the input data, starting with from the date format (it was simply strings such as 6/11/2011, not a true date in the format Google Docs supports). A second handicap was absolutely classic and has derailed many projects of a bigger scale than this one: the team wasn't sure what data to select and how to visualize it. Confusion reined over which demographics would be of most interest to the agency who gave them the data, and how to handle complex relationships such as different risk factors for getting HIV. The project leader was familiar with the agency and probably could have enunciated a vision, but for some reason it was hard to get across to the teams.

Turn-out was low for this hack-a-thon. Attendance shrank to about 15 for the presentations of projects. But the tension built as six o'clock approached. At the last minute, I was asked to be one of the judges.

There's a happy ending to all this: every team overcome its essential difficulties and annoying blocks.

  • Aether, the quietly intense team whose activity was totally opaque to me, pulled off a stunningly deft feat of programming. They are trying to improve patient compliance by using SMS text messaging to help the patient stay in contact with the physician and remain conscious of his own role in his treatment. A patient registers his cell phone number (or is registered by his doctor) and can then enter relevant information, such as a daily glucose reading, which the tool displays in a graph. Next steps includes adding notifications so the system can remind patients to participate or give them advice. The ability to compare physicians is also a goal. Aether won first prize today.

  • The Blue Button team achieved its basic goal of mashing up the NCI thesaurus with medications on a veteran's display. The output is crude (a lot of XML tags come out in the display, and the inserted text currently overlays the screen instead of being a hover-over), but the proof of concept succeeded. This was a big achievement for two coders with self-described rusty skills. Next steps include hooking up with other data sets and augmenting other fields such as allergies. This team won second prize today.

  • SeeDC, the HIV team, succeeded in curating their data--which they estimated to take up half their time today--and ultimately stored it in a relational database while using the project leader's favorite platform (Django) to generate visualizations. Another team member stuck to Google Charts and also produced some very nice displays. One of the team's goals is to make it easier for their agency not only to view the implications of their data but to generate reports for higher-level agencies. They also plan to work with the agency to help them collect and store cleaner data. This includes moving from paper forms to the web or a mobile interface.

  • SeNeSo (Senior Network Social) aims to improve the elderly's social life and their enjoyment of available activities. The proposed platform (no coding was done) includes a calendar, notifications of events, and event invitations. The platform could be integrated with some larger social networking site like Facebook. I could tell, by watching the team's discussions throughout the day, that these helped the team dramatically focus and scale down their goals to something achievable and clearly of value.

  • A final project used Google Refine to filter, sort, and check data from FDA product labels (mashed up with some privately collected data) on drugs submitted by firms.

For the Health 2.0 organization, the code-a-thons form a sequence leading up to an annual San Francisco event. The points I want to draw from this event are that 1) joining a code-a-thon for a day is lots of fun, 2) you can meet really fascinating and talented people at code-a-thons, 3) great ideas can really take off at these events, and 4) you don't have to domain-specific knowledge (health care in this instance) or even be a professional developer to contribute.

May 12 2011

Parsing a new Pew report: 3 ways the Internet is shaping healthcare

On balance, people report being helped by the health information they find online, not harmed. While social networking sites are not a significant source of health information for online users, they do provide a source of encouragement and offer community for caregivers and patients. One quarter of online users have looked at drug reviews online, with some 38% of caregivers doing so. One quarter of online users have watched a video about health. And a new kind of digital divide is growing between users who have access to mobile broadband and those who do not.

Those are just a few of the insights from a new survey on the social life of health information from the Pew Internet and Life Project. The results shed new light on how the online world is using the Internet to gather and share health data.

The Internet has disrupted how, where, when and what information we can gather and share about ourselves, one another and the conditions that we suffer from. Following are three key trends that reflect how the Internet is changing healthcare.

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 healthcare track at OSCON (July 25-29 in Portland, Ore.)

Save 20% on registration with the code OS11RAD



The quantified self


As Edd Dumbill observed here at Radar last year, network-connected sensors that track your fitness can increasingly be seen on city streets, gyms and wrists. Gary Wolfe has likened the growth of the quantified self to the evolution of personal computing in the 1980s.

The trend toward a data-driven life that Wolfe describes as the quantified self is no longer the domain of elite athletes or math geeks. Fully one quarter of online users are tracking their health data online, according to Pew's survey. "The Quantified Self and PatientsLikeMe are the cutting-edge of that trend, but our study shows that it may be a broader movement than previously thought," said Susannah Fox, Associate Director of Digital Strategy for the Pew Internet Project.

Carol Torgan, a health science strategist cited in the report, has shared further analysis of self-tracking. "Self-tracking is extremely widespread," writes Torgan. "In addition to all the organized tracking communities, there’s a growing number of organic self-tracking communities. For examples, take a look at the diabetes made visible community on Flickr, or the more than 20,000 videos on YouTube tagged weight loss journey."

Below, Gary Wolf delivers a TED Talk on the quantified self:

Participatory medicine

Another trend that jumps out from this report is the rise of e-patients, where peer-to-peer healthcare complements the traditional doctor-to-patient relationship. While health professionals were the number one source of health information cited in this survey, the Internet is a significant source for 80% of online users.

We're entering an age of participatory medicine, where patients can learn more about their doctors, treatments, drugs and the experiences of others suffering from their conditions than ever before. Twenty-five percent of American adults have read the comments of another patients online. Twenty-three percent of Internet users that are living with at least one of five of the chronic conditions named in the survey have searched online for someone that shared their condition.

Online forums where people voluntarily share data about symptoms, environmental conditions, sources of infection, mechanics of injury or other variables continue to grow, and there are now dozens of other social media health websites to explore. As Claire Cain Miller wrote in the New York Times last year, online social networks bridge gaps for the chronically ill. And as Stephanie Clifford wrote in 2009, online communities can provide support for elderly patients who are isolated by geography.

"These networks provide sense of distributed community, where you can find others who suffer from your condition and support for treatment," said Fox. "PatientsLikeMe is example of that."

PatientsLikeMe, in fact, recently published the results of a patient-driven clinical trial in Nature, the first such study in a major journal. Fox shared further thoughts on mapping the frontier of healthcare at e-patients.net:

The online conversation about health is being driven forward by two forces:  1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other. Pew Internet has identified two important trends in our data. One is what we call the "mobile difference" — hand someone a smartphone and they become more social online, more likely to share, more likely to contribute, not just consume information.

The other is what we call the "diagnosis difference" — holding all other demographic characteristics constant we find that having a chronic disease significantly increases an Internet user's likelihood to say they both contribute and consume user-generated content related to health. They are learning from each other, not just from institutions.

This trend emphasizes the link between health literacy, media literacy and digital literacy. When citizens search for information about health online, they're presented with a dizzying array of choices, including targeted advertising, sponsored blog posts, advertorials and online forums. One area where this will be particularly challenging is in pharmaceutical information. More open data about pharmaceuticals released by open government projects like Pillbox inject trustworthy information into the Internet ecosystem, as users searching for aspirin will find. However, the United States Food and Drug Administration has still not issued any official guidance for the use of social media by the industry. Given the growing percentage of caregivers and those suffering from chronic disease that are searching for information about drugs, such guidance may be overdue.

As the role of the Internet as a platform for collective action grows, its ability to connect fellow travelers will become increasingly important. As Clay Shirky observed in January, "we have historically overestimated the value of access to information and underestimated the value of access to one another."

A new digital divide

Internet access is information access. Citizens who are not online are by definition on the other side of the digital divide. In the 21st century, however, a data-driven life is also profoundly mobile.

According to the Pew Internet survey, 18% of wireless Internet users are tracking their own healthcare data, twice as many as those who do not have a wireless-enabled device. Open health data can spur better decisions for mobile users if they have access to a smartphone or tablet and the Internet. Without it, not so much.

"The difference that we see is in the mobile space," said Fox. "It's a younger demographic, and connected to that it's more diverse. When you look at who is accessing the Internet on their smartphone and has apps, you're likely to see a more diverse population. That's the promise of mobile health: that it will reach different audiences. And yet, these are not the audiences that are in the most need of health information. If you look at the numbers of people with disability or chronic disease, mobile is not closing that gap."

Fox spoke about the promise of mobile and the new digital divide at Transform 2010:

It's no secret that the ability to pay for data plans and smartphones is correlated with socioeconomic class status. Access to hardware may change as inexpensive Android devices continue to enter the market. According to ComScore, as of January 2011, 65.8 million Americans owned a smartphone, out of a total of 234 million users ages 13 and older. If 20% of those users switch over the course of this year, smartphone penetration will be just shy of 50%. That doesn't address the needs of those without access to broadband Internet. Simply having a smartphone and connection, however, doesn't result in the information literacy and health literacy needed to apply these tools.

That's a lot to ask of citizens, who will need well-designed healthcare apps to help them make sense of the data deluge. Given spiraling healthcare costs, however, the future of healthcare looks like it's in the palms of our hands.



Related:


March 23 2011

Four short links: 23 March 2011

  1. The Heritage Health Competition -- Netflix-like contest to analyze insurance-claims data to develop a model that predicts the number of days a patient will spend in hospital in the coming year. $3M prize. (via Aza Raskin)
  2. Historically Hardcore -- fantastic fake Smithsonian ads that manage to make the institution sexy. Naturally they've been asked to take them down.
  3. Another Plato Innovation Ignored -- turns out the above-the-fold doodle has a long and glorious history, culminating in a fantastic demonstration of our broken patent system.
  4. Graphite -- Enterprise scalable realtime graphing. Apache 2.0-licensed, written in Python. (via John Nunemaker)

February 16 2011

Health 2.0 / MAKE Developer Challenge happening this weekend in Boston

The Health 2.0 / MAKE Developer Challenge is happening this weekend, Feb 19th, in Boston. The day is bringing developers, designers, makers, researchers, care providers, sensor-geeks, hardware hackers, patients, and anyone else interested in improving healthcare by building new applications and tools. If you haven't signed up already, register now, because it's filling up fast.



Here's a sample of a few of the speakers that will be on hand:


  • Vaibhav Bhandari from Microsoft's Health Solutions Group. Vaibhav is going to be talking about HealthVault, medical ontologies, and untangling the various HealthCare IT standards.

  • John Brownstein from Harvard Children's Hospital. John is an epidemiologist who has studied diseases as varied as malaria, dengue, HIV, West Nile virus, Lyme disease, RSV and influenza. He's going to be speaking about his work with HealthMap, a site that brings together a variety of data to provide a comprehensive view of the current global state of infectious diseases and their effect on human and animal health.
  • Greg Borenstein from NYU's ITP school. He's going to be talking about how to hack the Kinect using Processing and Open Frameworks, and how it can be applied to health.
  • John Luciani from Wiblock. John is going to be walking through how to use the various goodies MAKE is supplying for the event: arduinos, sensor, modules, and so forth. He's also got some code demos teams can use for their projects.
  • Far McKon from Bug Labs. Far is bringing some really cool gear -- 5 complete bug bundles. The heart of the kit it is the 'Bug Base' which has built in wifi, bluetooth, and battery. Each kit has a general IO module (the Von Hippel), GPS, and a camera + accelerometer module. And sample code to use all of them, naturally.



  • Huge thanks to the MAKE team (particularly Dan Woods at the Maker Shed), Microsoft, and Bug Labs for their support for the event.


    As a teaser, check out Greg's demonstration code that uses OSCeleton Processing MotionCapture3D to convert data from the Kinect into 3D coordinates representing each of the joints of the body.


    Kinect and OSCeleton controlling a camera in 3D space in Processing from Greg Borenstein on Vimeo.



    He's written the project up on Skeleton Tracking with Kinect and Processing, and posted the code on github as controlling a 3d camera via gestures with kinect in Processing. His talk about the demo, and his assistance in getting teams set up, should be the basis for a lot of fun projects.


    Looking forward to seeing you there.

    February 03 2011

    A new challenge looks for a smarter algorithm to improve healthcare

    Starting on April 4, the Heritage Health Prize (@HPNHealthPrize) competition, funded by the Heritage Provider Network (HPN), will ask the world's scientists to submit an algorithm that will help them to identify patients at risk of hospitalization before they need to go to the emergency room.

    "This competition is to literally predict the probability that someone will go to the hospital in the next year," said Anthony Goldbloom at the Strata Conference. Goldbloom is the founder and CEO of Kaggle, the Australian data mining company that has partnered with HPN on the competition. "The idea is to rank how at risk people are, go through the list and figure out which of the people on the list can be helped," he said.

    If successful, HPN estimates that the algorithm produced by this competition could save them billions in healthcare costs. In the process, the development and deployment of the algorithm could provide the rest of the healthcare industry with a successful model for reducing costs.

    "Finally, we've got a data competition that has real world benefits," said Pete Warden, author of the "Data Source Handbook" and founder of OpenHeatMap. "This is like the Netflix Prize, but for something far more important."

    The importance of reducing healthcare costs can't be underestimated. Nationally, some $2.8 trillion dollars are spent annually on healthcare in the United States, with that number expected to grow in the years ahead. "There are two problems with the healthcare reform law," said Jonathan Gluck, a senior executive at HPN. "We pay for quantity — the more services you consume, the more we're going to bill you — and it never addressed personal responsibility."

    If patients who would benefit from receiving lower cost preventative care can receive relevant treatments and therapies earlier, the cost issue might be addressed.

    Why a prize?

    HPN is just the latest organization to turn to a prize to generate a solution to a big problem. The White House has been actively pursuing prizes and competitions as a means of catalyzing collaborative innovation in open government around solving grand national prizes. From the X-Prize to the Netflix Prize to a growing number of challenges at Challenge.gov, 2011 might just be the year where this method for generating better answers hits the adoption tipping point.

    Goldbloom noted that in the eight months that Kaggle has hosted competitions, they've never had one where the benchmark hasn't been outperformed. From tourism forecasting to chess ratings, each time the best method was quickly improved within a few weeks, said Goldbloom.

    As David Zax highlighted in his Fast Company article on the competition, adding an algorithm to find patients at risk might suggest that doctors' diagnoses or clinical skills are being subtracted from the equation. The idea here is not necessarily to take away a doctor's skills. Rather, it's to provide them with predictive analytics that augment those capabilities. As Zax writes, that has to be taken in context with the current state of healthcare:

    A shortage of primary care physicians in the U.S. means that doctors don't always have time to pick up on the subtle connections that might lead to a Gregory House-style epiphany of what's ailing a patient. More importantly, though, the algorithms may point to connections that a human mind simply would never make in the first place.

    Balancing privacy with potential

    One significant challenge with this competition, so to speak, is that the data set isn't just about what movies people are watching. It's about healthcare, and that introduces a host of complexities around privacy and compliance with regulations. The data has to be de-identified, which naturally impairs what can be done. Gluck emphasized that the competition is HIPAA-compliant. Avoiding a data breach has been prioritized ahead of a successful outcome in the competition. Not doing so, given the sanctions that exist for such a breach, might well have made the competition a non-starter.

    Gluck said that Khaled El Eman, a professor at the University of Ontario and a noted healthcare privacy expert, has been making attempts to de-anonymize the test data sets. Gluck said El Eman has been using public databases and other techniques to try and triangulate identity with records. To date he has not been successful.

    Hotspotting the big picture

    The potential of the Heritage Health Challenge will be familiar to readers of the New Yorker, where Dr. Atul Gawande published a feature on "healthcare hotspotting." In the article, Gawande examines the efforts of physicians like Dr. Jeffrey Brenner, of Camden, New Jersey, to use data to discover the neediest patients and deliver them better care.

    The Camden Coalition has been able to measure its long-term effect on its first thirty-six super-utilizers. They averaged sixty-two hospital and E.R. visits per month before joining the program and thirty-seven visits after—a forty-per-cent reduction. Their hospital bills averaged $1.2 million per month before and just over half a million after—a fifty-six-per-cent reduction.

    These results don’t take into account Brenner’s personnel costs, or the costs of the medications the patients are now taking as prescribed, or the fact that some of the patients might have improved on their own (or died, reducing their costs permanently). The net savings are undoubtedly lower, but they remain, almost certainly, revolutionary. Brenner and his team are out there on the boulevards of Camden demonstrating the possibilities of a strange new approach to health care: to look for the most expensive patients in the system and then direct resources and brainpower toward helping them.

    The results of the approach taken in Camden is controversial, as Gawande's response to criticism of his article acknowledges. The promise of applying data science to identifying patients at higher risk, however, comes at a time when the ability of that discipline to deliver meaningful results has never been greater. If a smarter predictive algorithm emerges from this contest, $3 million dollars of prize money may turn out to have been a bargain.



    Related:


    June 13 2010

    Gov 2.0 Week in Review

    As usual, there's no shortage of news in the government 2.0 world. There has been one watershed event since our last Gov 2.0 Week in Review, however: the early results of the decision to open up community health data. Here come the healthcare apps. Will the Department of Health and Human Services make community health information as useful as weather data? Will the innovation and associated business value match that unlocked by GPS and NOAA weather data?

    it-dashboard.jpg

    An even more pressing question is whether information technology can help close the yawning gap in federal and state government budgets. "Budget director Peter Orszag's speech, Closing the IT Gap, explains what we're about with Gov 2.0 Events," tweeted Tim O'Reilly earlier this week. Peter R. Orszag, Director of the Office of Management and Budget, spoke at length at the Center for American Progress on a "significant IT gap" that has developed between the public and private sector. Orzag cited this IT gap as a big part of the productivity divide between the two.

    "Closing this IT gap is key to boost efficiency and make government more open and responsive to the wants and needs of the public," wrote Orzag at WhiteHouse.gov, where he linked to budget guidance for agencies and a memo that instructs them to identify "their bottom 5 percent performing programs."

    One of the ways that the federal government plans to save some taxpayer dollars will be through data center consolidation. Another will be through bread and butter IT, like the green data center in the House of Representatives that I reported on last year. A third will likely be cloud computing, given the millions that Los Angeles saved in IT costs or estimated $750,000 saved though moving Recovery.gov to Amazon's cloud, though serious questions will persist about what government sites or services can be moved to public clouds. A new European Union project on economic effects of open government data may shed light upon whether that approach offers cost savings as well.

    More on the past week, including cloud computing, cybersecurity, the 2010 Personal Democracy Forum and Twitter in government, after the jump.

    Cloud computing costs, claims and future

    If you missed it, Federal CIO Vivek Kundra delivered a keynote at the Cloud Computing Forum and Workshop last month, embedded below. In the speech, Kundra called for the use of cloud computing to narrow a gap between consumers and government while maintaining security, data portability and interoperability.

    A new Pew Internet report on the future of cloud computing offered many more perspectives on the topic. A solid majority of respondents agreed with the contention that by 2020, "most people will access software applications online and share and access information through the use of remote server networks, rather than depending primarily on tools and information housed on their individual, personal computers."

    O'Reilly Radar's own Andy Oram contributed to Pew Internet report on cloud computing. He's quoted in the findings, recommending that "cloud application providers recognize the value of grassroots innovation - following Eric von Hippel's findings - and solicit changes in their services from their visitors. Make their code open source - but even more than that, set up test environments where visitors can hack on the code without having to download much software. Then anyone with a comfortable keyboard can become part of the development team. We'll know that software services are on a firm foundation for future success when each one offers a 'Develop and share your plug-in here."'

    Reflecting the internationalization of the trend, where NASA and Japan announced a cloud computing collaboration that will explore interoperability opportunities between NASA's Nebula Cloud Computing Platform and Japan's NII Cloud Computing Platform. "By demonstrating how cloud interoperability can facilitate international collaboration and seamless global access to public data, NASA hopes to accelerate the development of cloud standards and the adoption of cloud infrastructure services by the scientific community," said Chris C. Kemp, NASA's Chief Technology Officer for Information Technology.

    Kemp spoke with me about his role at NASA and Nebula at the Gov 2.0 Expo last month:

    As Carl Brooks reported at SearchCloudComputing.com, the first comprehensive, vendor-neutral cloud computing benchmarks are in the wild at CloudHarmony.com.

    Looking back at Personal Democracy Forum 2010

    Can the Internet fix politics? The answer to that question may not be clear for years. After the Personal Democracy Forum's annual conference, it's clear that the Internet has significantly disrupted the ways that candidates campaign, officials govern and agencies form policy. Highlights of Personal Democracy Forum included some fascinating applications, including TransparencyData.com, SeeClickFix and Meetup Everywhere.

    As Nick Judd reported that mainstream media is a part of the solution for fixing government. Change agents inside of government and engaged citizens are also crucial. All three parties could benefit from publishing public data online, as the FTC highlighted in its discussion draft on the future of journalism.

    Federal CTO Aneesh Chopra spoke at length about rethinking government, which he later blogged about at the Huffington Post in empowering Americans through open government. Chopra highlighted the Community Health Data Forum, "Apps for Healthy Kids" and IT dashboards for spending, among other initiatives.

    As his wont, Clay Shirky delivered a thoughtful talk on the Internet, citizenship and lessons for government agencies that are looking for feedback online. Hint: use taxonomies to aggregate ideas instead of a single list.

    Can technology forge a new relationship between government and the public? Arianna Huffington considers the possibility after PDF 2010, where she participated in the closing panel. That discussion, which also included Tim O'Reilly, Saul Anuzis, Nick Bilton, Andrew Rasiej. and Newark mayor Cory Booker, is embedded below:

    And in a huge win for Jen Pahlka's big idea, the Omidyar Network announced a $250,000 grant to Code For America, which is now recruiting fellows. "Ask not what your country can code for you - Ask what you can code for your country."

    Twitter looks for a government liaison

    Why is Twitter hiring a government liason? Twitter VP Sean Garrett offered up some insight on a new opening for a government liaison, which he said will serve as "a point person that can help verify government IDs, someone that can be down the street to meet with officials in their office, or serve as an overall point person for government outside the Beltway." The Department of Human Services’ new media guru, Andrew P. Wilson, offered up a thoughtful Top 10 Requests for the New Government Liaison at Twitter.

    Internet Freedom and U.S. Foreign Policy

    As clashes and protests are reported in Iran on the one year anniversary of the historic protests there, the Wall Street Journal reported that the U.S. stepped up tech support for Iranian dissidents. Should the U.S. support Internet freedom through technology? As I reported in my interview with Secretary of State Clinton's senior innovation advisor, Alec J. Ross, technology for Internet freedom and innovation is supported by the State Department.

    Using the Internet to communicate about the oil spill

    USCG commander Thad Allen and White House press secretary Robert Gibbs held a live briefing on the Obama administration's response to the Deepwater oil spill in the Gulf of Mexico that was streamed through WhiteHouse.gov/live. Affected parties are urged to submit claims to BP using DisasterAssistance.gov. Carol Browner, Assistant to the President for Energy and Climate Change, also took questions on the oil spill in a live Web chat using Facebook and WhiteHouse.gov. The archived video is embedded below:

    Digital Capitol Week

    dcweek-logo.jpg

    Here in the District of Columbia, Digital Capitol Week is now underway. While many of the workshops, clinics, festivals and parties are well worth the time of the thousands of registered attendees, look for the Gov 2.0 and Org 2.0 Day to be particularly notable for this space, along with the DC 140 Conference, where I'll be speaking with NPR's Andy Carvin about "Emergency Response 2.0." For more, iStrategy Labs has helpfully published "the one post you'll need to read" about Digital Capitol Week.

    Government 2.0 Bits and Bytes

    Elsewhere on the Web, David Eaves offered some thoughtful advice to governments on how to engage with social media and suggested that cities should fork the Kuali Foundation to save millions of dollars.

    I posted video of how intelligence agencies are connecting the dots with Intellipedia.

    The clever developers at the Guardian created coins.guardian.co.uk for easy browsing of government spending.

    The new Texas.gov features an open data section and the first state use of Get Satisfaction. If you missed it last month, there's also a newly-redesigned CA.gov, including a refreshed data repository and an Apps for California contest.

    For more on such endeavors, make sure to read Mark Headd's "A 'Glass Half Full' View of Government App Contests and Government "Apps" Move from Cool to Useful in Governing.

    Germany's President resigned last week, due in part to the power of social media, which played a role in Köhler's departure and replacement.

    Military intelligence is tapping social networking skills, enabling a distributed force to conduct swarm warfare via chatrooms. As a guest post on Boing Boing revealed, the military has improved its language education through innovative use of brochures and virtual education.

    The State Department launched a mobile website at m.state.gov.

    bloomberg-ipad.jpg

    Mike Bloomberg has earned some plaudit as an "iPad Mayor." As Javier Hernandez reported for the New York Times, while Bloomberg is still mastering the device, his deputy mayor for operations, Stephen Goldsmith, is apparently interested in using his iPad to monitor city data and take notes at meetings. “This is the future of public service — digital data pushed to workers who use better information to make smart decisions,” he wrote to Hernandez.

    Finally, Mike Kujawski posted a series of great links and takeaways from the Gov 2.0 Expo, proving that's it's never too late to post your impressions.

    What else is happening in Gov 2.0?

    Inevitably, we're going to miss some links, so make sure to read Nancy Scola at techPresident and follow my Gov 2.0 list on Twitter, embedded below. And as always, if you have tips or suggestions, please email them to alex@oreilly.com or leave links in the comments.

    June 02 2010

    Making community health information as useful as weather data

    hhsframeworks.jpgThe chief technology office of Health and Human Services, Todd Park, is fond of using the National Ocean and Oceanographic Association (NOAA) as a metaphor for the innovation that may be unlocked through releasing public data. NOAA data underpins Weather.com and nearly every commercial meteorological service in the United States. Park has been working closely with other government officials and the technology community to put community healthcare data into a parallel role as a catalyst for innovation. In other words, HHS is creating a framework for government to act as a platform through the Community Health Data Initiative.

    "The idea to make our community data as useful to the world as weather data or other types of data is to other parts of American life," said Park yesterday at a media briefing. "The real magic is that HHS put data out there on March 11 and the world responded. Innovators responded -- from Google to Microsoft to startups -- and have built amazing apps that HHS could never have built itself. That's built amazing value for citizens."

    It's clear that at HHS, as Tim O'Reilly observed in his post on NHIN Connect and open healthcare records, "there's some fresh thinking going on here, influenced by the best practices of open standards and rapid Internet development."

    This morning, Park will join HHS Secretary Kathleen Sebelius and White House CTO Aneesh Chopra at the Institute of Medicine at the National Academy of Science, where they will host the Community Health Data Forum.

    For those unable to attend the event in person, the CHDI event will be streamed at HHS.gov/live and through this livestream. The agenda is available online. After the jump, you can get a sneak preview of some of the applications that will be going live today.

    Apps, games and platforms for open health data

    Yesterday's preview featured fascinating creations from the National Association of Counties (NACO), GE, Bing, Healthways and Google. Collectively, they hold promise for enabling citizens to make better health decisions and providers to make data-driven policy.

    Google Fusion Tables and health data

    hospital finder.jpgGoogle's Fusion Tables are essentially a lightweight online database powered by Google's cloud that allow users to examine data, combine it and share. Instead of the "best place to live," users can search through community health data, mash it up with maps and see which regions are, for instance, the "best places to have chest pain."

    Using Fusion Tables and CHDI data, Dr. Ronnie Zieger, Google's chief health strategist (and a practicing doctor) showed at the media briefing how to filter for region and a certain value, like heart attack mortality. He called his particular mashup Hospital Finder, though the datasets could be adapted for may other users. Users can restrict a search to just hospitals with a "lower than" value, zoom in to maps or customize search results with metrics aggregated under "Heart friendly" or "People friendly" labels.

    Bing visualizes health data

    bing-search.jpgEarlier this year, Bing quietly began adding public health data provided by patient ratings immediately below search results for hospitals. The box also includes nearby facilities, ranked by distance, and the ability for searchers to share with their social networks.

    Bing's product managers say they'll be introducing a “virtual supermarket” program that lets policy makers identify "food deserts." A new app called Bing HealthMaps -- live today -- allows users to search using geolocated data and add overlays for the incidence of health conditions, like Diabetes or obesity. Bing will also integrate Oodle classifieds with health data, enabling searches to load rentals, school ratings and layer on different conditions.


    Network of Care for Healthy Communities

    network-care.jpgNetwork of Care for Healthy Communities is a web-based portal that targets individuals and policy makers. The portal includes multiple components, including:

    • A service directory of every service that deals with health for a region, with more than 2,000 entries.
    • A library with more than 50,000 volumes. Both the directory or library can be dropped with a click into a personal health record.
    • A selection of links, including nearly 20,000 health-related links from around the country.
    • A legislative section that includes every bill dealing with health in state legislature and in Congress

    The web portal could be adopted by other counties. For example, the template that's applied to Sonoma County can be replicated fairly easily. The portal is built upon a number of open source and proprietary applications. As it's also a service, there would be a cost associated with customization.


    General Electric commits to health apps

    cost-getting-sick-asthma.jpg

    GE launched Healthymagination.com in May of 2009, focusing on showing data to drive change. Infographics and visualizations, like those that show the cost of getting sick, have received hundreds of thousands of views with no promotion. An interactive health visualizer has been particularly popular. GE will be adding new apps that present more health data in aggregate, including community health rankings. An interactive map, for instance, provides visualization for regional public health data all across the United States.

    Social gaming for better health?

    community-clash.jpgA health game called Community Clash will marry public health data to game mechanics. Users can get their own "well-being score" and then share their results with friends.

    The game mashes up four data sources: CHDI, Twitter, Gallup polls and well-being assessments. In the future, the game's creators hope to build leader boards, encourage social comparison, and add geo-location and sentiment analysis.



    Open data as a means to healthier communities

    By releasing data and empowering the technology to build applications, HHS CTO Todd Park hopes to catalyze healthcare policy, delivery and services. The same evidence-based medicine that bids to make healthcare better could be applied on an even grander scale, and yet only for the cost of releasing good data. That's a bargain Park seems willing to make. "In less than 90 days, we've had a growing number of innovators team up to take ideas that originated on March 11 and then expand upon them to turn into beta applications," he said.

    Park formally announced the launch of an interim CHDI website, which is already accessible through HHS.gov/open under the "Connect with data" button. He also said that there will be a new HHS Health Indicators Warehouse, launching in December 2010, that will have Medicare community-level indicators.

    The Community Health Data Forum will kick off the Health 2.0 Developer Challenge (Health2challenge.org), which will extend through this fall. Over the next four months, the Challenge will host a series of code-a-thons and team competitions to build apps based upon CHDI data.

    "We're going to ask developers to submit the coolest apps they could use to improve the mission," said Park. Regional events will culminate in a final challenge during the fourth annual Health 2.0 Conference in San Francisco.



    Todd Park on open health data and innovation


    At the recent Gov 2.0 Expo in Washington, I spoke with Park about the Community Health Data Forum, NHIN Direct, innovation and much more.

    April 07 2010

    Stop Fishing and Start Feasting: How Citable Public Documents Will Change Your Life

    Putting government documents and data online is a great step towards making our government process more transparent to the people it serves, but in many ways simply making the material available is like serving someone dinner by giving them a pond full of fish. The pond is huge and the poor dinner guest doesn't have any tools. Worse, they're only looking for one particular bass, and every time someone sends them to where they last saw the fish it's long gone.

    The recent healthcare bill was more than 1,000 pages long. The budget can often be half again that big. Commenting on these types of documents as they are currently implemented is extremely challenging. Pointing a finger at that big pond and telling someone that you swear you saw a fish isn't very effective. It's even worse when someone swears they saw a fish that isn't really there and it is effective because no one is willing to refute them. No one has time to wade around themselves and so they take it on faith. The recent "killing grandma" scare is an excellent example.

    Citations, first, are a way of pointing at the fish. A simple paragraph level of granularity for references should be enough. This promotes ease of implementation and use and provides a tight enough zoom to bring someone right to the material being discussed.

    The next problem is that fish move. If you're trying to point out a moving fish, and show it to someone later, you need to have a photograph with a timestamp. That line in the budget about forcing our children to manufacture chemical weapons might have moved to page three the next day, or a wily senator may have changed the wording and put it under a different heading. Proper citability requires an archived snapshot of the online material that maintains the integrity of any reference links.

    Lastly, for someone to believe you about this fish, you need to have a way of pointing out where you saw it at the specified time. They'll want to know it was the same pond.

    Making it possible to create timestamped permalinks at a paragraph level of granularity would be a huge leap forward in increasing government transparency through its online documents. The same principles apply when producing citable government data. When recovery.org decided to display visual representations of the data coming in about recovery money around the nation, it quickly became clear that some amount of data was erroneous. When the errors were reported and the data was later modified, there wasn't any way to go back and compare the two versions to see what changes had taken place. A blogger, reporter, statistician or scientist should be able to run a query against any specific collection of government data, as it was published, for a given version or moment in time.

    WHAT WE'RE DOING

    The nonprofit, nonpartisan League of Technical Voters has proposed a simple, easy to build and implement citability solution. Open source software development is underway and a wide range of government institutions are already on board. If you would like to help with this effort, consider being part of our upcoming codeathon or create your own codeathon.

    March 05 2010

    Open government examples from the ONC

    With the sea change caused by the Open Government Directive I know that many federal agencies might be struggling with how to actually implement this new policy. This is a major cultural shift in government and there are always challenges when trying to bring such broad changes to any large organization. Government bureaucracy is certainly no exception. But this last week I was encouraged by one agency's office, which has shown a great start-up mentality in not only moving toward government 2.0 principles, but also achieving some pretty significant accomplishments along the way.


    The Healthcare Information and Management Systems Society (HIMSS) hosts an annual event focused around health IT professionals and health IT vendors (Andy Oram has been covering HIMSS). I was fortunate at this year's HIMSS conference to have conversations with staff from the Office of the National Coordinator. Much of the discussion revolved around the rules for meaningful use of electronic health records, the creation of a Nationwide Health Information Network (NHIN), and standards and certification. But of course, I couldn't have access to federal officials without bringing transparency and open government into the conversation.

    So what is the Office of the National Coordinator and why are they at a health IT vendor show? An April 27, 2004 executive order signed by President Bush established the Office of the National Coordinator for Health Information Technology (ONC) within HHS. This office was legislatively mandated in the Health Information Technology for Economic and Clinical Health Act (HITECH Act) of 2009. President Obama named Dr. David Blumenthal as national coordinator for health information technology.

    As the national coordinator, Blumenthal will lead the implementation of a nationwide, privacy-protected health information technology infrastructure as called for in the HITECH portion of the American Recovery and Reinvestment Act (ARRA). When President Bush created the ONC, the goal was for Americans to have access to an interoperable Electronic Health Record (EHR) by 2014. There has been bipartisan agreement that health IT can lower costs and improve quality and clinical outcomes. President Obama has embraced these goals. The effort has been funded with stimulus dollars and plans are well under way.

    At least $20 billion in healthcare funding is included in the HITECH provisions of the ARRA for electronic health records. The ONC was funded $2 billion, along with additional funds for CMS as financial incentives for physicians and other providers to adopt and utilize EHRs, and funding for states, Regional Extension Centers (REC), workforce development and other programs to assist in implementation.

    The ONC has a huge job ahead of it. Ramping up such a large organization is difficult, especially in light of the President's promise in his Open Government Directive that his administration "would be committed to creating an unprecedented level of openness" to "ensure the public trust and establish a system of transparency, public participation and collaboration."

    The HITECH legislation created the HIT Standards Committee and the HIT Policy Committee under the auspices of the Federal Advisory Committee Act (FACA). The HIT Policy Committee is charged with making recommendations to the National Coordinator on a policy framework for the development and adoption of a nationwide health information infrastructure, including standards for the exchange of patient medical information. The HIT Standards Committee is charged with making recommendations to the National Coordinator on standards, implementation specifications, and certification criteria for the electronic exchange and use of health information. Both of the FACAs formed several workgroups to further their work comprised of stakeholder representatives and subject matter experts. With two FACAs and 10 different workgroups, there was initially some confusion about meeting schedules and difficulty sometimes getting meeting materials or accessing transcripts. There was also times when the workgroups were held in closed session, which made open collaboration more difficult.

    On Decemeber 8, 2009, ironically the same day same day the Office of Management and Budget released its 11-page Open Government Directive, the Privacy and Security workgroup under the HIT Policy Committee met in a closed-door session. There was no notification of the meeting being closed in the Federal Register. The Dec. 16, 2009 NHIN workgroup met in public session from 10 a.m. until about 12:50 p.m., then re-convened behind closed doors. This was a troubling trend, and tweets, blog postings and media report from Joseph Conn at Modern Healthcare decried the practice.

    Blumenthal responded on the ONC blog by announcing that all meetings would by default be open to the public, and exceptions would only be at the written request of the workgroup chair(s), reflecting a majority vote by the membership to hold a closed hearing and a justification to do so. But this was only the beginning of continuing efforts at transparency.

    Federal CTO Aneesh Chopra has also been using the ONC blog effectively, evenasking for examples of struggles and opportunities in EHR adoption. I expect that as the use cases Chopra has asked for begin rolling in, we will see some great success stories and pitfalls to avoid.

    Initially all of these meeting schedules were somewhat difficult to track (they have a lot of meetings), and sorting through the Federal Register can be tedious. The new calendar that allows you to drill down to meeting materials is extremely handy. This has made keeping tabs on what is going on more efficient and provided a much more open process for citizen participation.

    Other areas that have been improved are the transcripts and audio portions of the meetings. But after bouncing back and forth many emails between ONC staff, Altarum (the contractor providing services to ONC) and myself, they were very responsive to making some great enhancements to the site. I'm sure that many of these enhancements were in the pipeline, but the fact that the ONC has reached out in a collaborative way to engage consumers of this public information is a testament to their efforts. The archives of meeting materials and the webcasts are now very well arranged and accessible, such as this December 15, 2009 HIT Policy meeting.

    The two blogs, Health IT Buzz and FACA Blog, have been great examples of using social media to encourage participation in the process. With the recent announcement of NHIN Direct, there is another opportunity through this new blog to help expand the breadth of the NHIN to create a means for direct communication between providers. And now opening the @ONC_HealthIT Twitter account shows further efforts in using social media to provide a platform for civic engagement. I am very impressed with the ability of the staff to use these tools effectively.

    Now of course, there are still some areas for improvement. The organizational chart was updated only after much pestering. And although I know it is not a top priority in their efforts, nor should it be, I hope to see much better transparency in the publication of a listing of public employees and contractors, with some clearly defined roles. The CMS organizational chart is a nice model for the type of information, although even this could be improved upon. I'm confident that as time goes by we will see the ONC continue to lead in innovative ways of communicating and collaborating using Web 2.0 technologies.

    The ONC has a monstrous amount of work yet to accomplish, so there have been and there will continue to be challenges in their efforts to be as open and transparent as possible. But this office has shown a remarkable willingness to think outside of the box and try new ways of operating. I believe that the ONC can truly be a model for other offices within HHS and for other federal agencies that are trying to move toward government 2.0 practices.

    November 19 2009

    Health gets personal in the cloud

    Healthcare is one of the biggest industries in the world. The United States spends over 17% of its GDP on healthcare and the issue of the industry's future is being hotly debated in Congress. Whatever happens to other elements of health reform, health information technology will play a key role in moving us towards the goal of bending the cost curve and improving quality and clinical outcomes. A Personal Health Record (PHR) is one way that patients can have some control of their own health data, while providing an interoperable platform for sharing relevant clinical data between providers. Healthcare is changing rapidly and there are some important trends worth watching.


    Healthcare in the near future will be quite different than it is today. Web enabled technology is already changing the way medicine is practiced. As the digital nation comes of age we will see new opportunities, and new challenges, bringing healthcare in America into the 21st century. Health consumers will come to expect they will have control over their own health data. Having secure, interoperable access to clinical data will allow patients to partner with their care providers in new ways incorporating Web 2.0 principles.


    For example, Google announced at the Health 2.0 conference that they have entered into a partnership to provide telehealth services through their Google Health platform using MDLiveCare. With the integration of MDLiveCare technology, Google can provide a service that offers patients access to doctors from remote locations, via webcam or telephone, into its personal health record offering. This will be particularly valuable for those who are caring for their loved ones from far away. My family is scattered around the country and caring for our mother with advanced stage Alzheimer's was quite a challenge that would have benefited from this type of service.
    Here is a screenshot of Google Health:
    google-health.jpg


    "Patients remember less than 25% of what they're told when they consult with a doctor,” said Bob Smoley, CEO, MDLiveCare, in the statement. "By directly synchronizing the information that's shared…we're able to provide patients with a convenient solution to review their physician or therapist encounters."

    "We strongly believe that the patient has the right to control their own health data," said Product Manager of Google Health Roni Zeiger, MD a practicing Internist who also works in urgent care. "You can now request an online consultation with a physician. At the end of the visit the doctor documents the encounter and it is immediately sent to your Google Health account and you will have a complete record of the doctor's notes."

    Also, Microsoft has introduced My Health Info as part of HealthVault. My Health Info is an interactive and customizable dashboard that allows people to view all their health information: Blood pressure, blood glucose, BMI, immunizations, allergies, lab results, medications, steps walked, health articles and more, in a single, organized, and convenient location. It connects with HealthVault so information updated in one product is automatically updated in the other. This service offers tools and widgets to upload, organize and monitor health information stored in their personal HealthVault accounts. The service also allows people to research medical concerns, read the latest health news, gain guidance from medical experts, learn about nutrition, and monitor conditions such as high blood pressure or diabetes.

    This is the main screen for My Health Info: myhealthinfograb.JPG "As consumers are increasingly being asked to manage more of their health and wellness, they are looking for solutions that help them navigate an overwhelming amount of information, enabling them to take control of their personal health data," said David Cerino, General Manager of Consumer Health in Microsoft Health Solutions Group. Marguerite Yeo, Director of Product Marketing for Microsoft HealthVault told me about Online Care deployed by Hawaii Medical Service Association (HMSA) an independent licensee of the Blue Cross and Blue Shield Association. Online Care, enhanced by Microsoft Healthvault, allows patients to see physicians immediately, through live consultations via Web or phone. By providing access to doctors anytime in the patient‘s home, health plans like HMSA have the opportunity to shift healthcare to less expensive care settings when appropriate.

    Another company that is doing some interesting work in this area is Practice Fusion. Practice Fusion is a free, Web-based electronic health record service for physicians. They recently announced the launch of Patient Fusion, their new PHR, at Dreamforce 2009 in San Francisco, salesforce.com's user and developer conference.

    "The healthcare and life sciences community is a rapidly growing sector," said Clarence So, Senior Vice President of Strategy, salesforce.com. "The Force.com platform allows companies like Practice Fusion to quickly innovate around a common objective for improving health." Through Patient Fusion, doctors grant patients instant access to their medical records, medications and immunization history. Updates to the patient's records are available in real-time in the cloud. Patients will also be able to schedule appointments, request prescription refills, email their physicians, and, most importantly, share their data with other providers at any time.

    Here is a shot of the main Health Manager screen: Thumbnail image for myhealth_screenGrab.png

    They also announced ChartShare, a feature which allows users to have real-time access to patient records in a familiar and interactive format. All authorized users can access records simultaneously. This enables care providers to share clinical data and allows real time collaboration and consultation.

    "Practice Fusion continues to innovate in the healthcare market by offering a free Web-based PHR that is an extension of the practitioners' EHR. We're unlocking the physician EHR to give patients access and control over their own health data," said Ryan Howard, the CEO of Practice Fusion. He also told me, "The January release of Patient Fusion will allow the same ability that physicians now have using ChartShare for portability of data on the patient side."

    Whether it is by using a platform like Microsoft HealthVault or Google Health, or a SaaS model EMR/PHR like Practice Fusion, the options for patients and providers to coordinate care using Web 2.0 technology is making great strides. We will increasingly see platforms that provide virtual visits with care providers, and greater use of the web for tasks like making appointments, medication and therapy reminders, and making payments. I look forward to the day when I can login for a consultation with my doctor as easily as I Skype with my friends around the world. The future of healthcare is here, and it is beginning to be distributed.
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    Schweinderl