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August 09 2012

Five elements of reform that health providers would rather not hear about

The quantum leap we need in patient care requires a complete overhaul of record-keeping and health IT. Leaders of the health care field know this and have been urging the changes on health care providers for years, but the providers are having trouble accepting the changes for several reasons.

What’s holding them back? Change certainly costs money, but the industry is already groaning its way through enormous paradigm shifts to meet current financial and regulatory climate, so the money might as well be directed to things that work. Training staff to handle patients differently is also difficult, but the staff on the floor of these institutions are experiencing burn-out and can be inspired by a new direction. The fundamental resistance seems to be expectations by health providers and their vendors about the control they need to conduct their business profitably.

A few months ago I wrote an article titled Five Tough Lessons I Had to Learn About Health Care. Here I’ll delineate some elements of a new health care system that are promoted by thought leaders, that echo the evolution of other industries, that will seem utterly natural in a couple decades–but that providers are loathe to consider. I feel that leaders in the field are not confronting that resistance with an equivalent sense of conviction that these changes are crucial.

1. Reform will not succeed unless electronic records standardize on a common, robust format

Records are not static. They must be combined, parsed, and analyzed to be useful. In the health care field, records must travel with the patient. Furthermore, we need an explosion of data analysis applications in order to drive diagnosis, public health planning, and research into new treatments.

Interoperability is a common mantra these days in talking about electronic health records, but I don’t think the power and urgency of record formats can be conveyed in eight-syllable words. It can be conveyed better by a site that uses data about hospital procedures, costs, and patient satisfaction to help consumers choose a desirable hospital. Or an app that might prevent a million heart attacks and strokes.

Data-wise (or data-ignorant), doctors are stuck in the 1980s, buying proprietary record systems that don’t work together even between different departments in a hospital, or between outpatient clinics and their affiliated hospitals. Now the vendors are responding to pressures from both government and the market by promising interoperability. The federal government has taken this promise as good coin, hoping that vendors will provide windows onto their data. It never really happens. Every baby step toward opening up one field or another requires additional payments to vendors or consultants.

That’s why exchanging patient data (health information exchange) requires a multi-million dollar investment, year after year, and why most HIEs go under. And that’s why the HL7 committee, putatively responsible for defining standards for electronic health records, keeps on putting out new, complicated variations on a long history of formats that were not well enough defined to ensure compatibility among vendors.

The Direct project and perhaps the nascent RHEx RESTful exchange standard will let hospitals exchange the limited types of information that the government forces them to exchange. But it won’t create a platform (as suggested in this PDF slideshow) for the hundreds of applications we need to extract useful data from records. Nor will it open the records to the masses of data we need to start collecting. It remains to be seen whether Accountable Care Organizations, which are the latest reform in U.S. health care and are described in this video, will be able to use current standards to exchange the data that each member institution needs to coordinate care. Shahid Shaw has laid out in glorious detail the elements of open data exchange in health care.

2. Reform will not succeed unless massive amounts of patient data are collected

We aren’t giving patients the most effective treatments because we just don’t know enough about what works. This extends throughout the health care system:

  • We can’t prescribe a drug tailored to the patient because we don’t collect enough data about patients and their reactions to the drug.

  • We can’t be sure drugs are safe and effective because we don’t collect data about how patients fare on those drugs.

  • We don’t see a heart attack or other crisis coming because we don’t track the vital signs of at-risk populations on a daily basis.

  • We don’t make sure patients follow through on treatment plans because we don’t track whether they take their medications and perform their exercises.

  • We don’t target people who need treatment because we don’t keep track of their risk factors.

Some institutions have adopted a holistic approach to health, but as a society there’s a huge amount more that we could do in this area. O’Reilly is hosting a conference called Strata Rx on this subject.

Leaders in the field know what health care providers could accomplish with data. A recent article even advises policy-makers to focus on the data instead of the electronic records. The question is whether providers are technically and organizationally prepped to accept it in such quantities and variety. When doctors and hospitals think they own the patients’ records, they resist putting in anything but their own notes and observations, along with lab results they order. We’ve got to change the concept of ownership, which strikes deep into their culture.

3. Reform will not succeed unless patients are in charge of their records

Doctors are currently acting in isolation, occasionally consulting with the other providers seen by their patients but rarely sharing detailed information. It falls on the patient, or a family advocate, to remember that one drug or treatment interferes with another or to remind treatment centers of follow-up plans. And any data collected by the patient remains confined to scribbled notes or (in the modern Quantified Self equivalent) a web site that’s disconnected from the official records.

Doctors don’t trust patients. They have some good reasons for this: medical records are complicated documents in which a slight rewording or typographical error can change the meaning enough to risk a life. But walling off patients from records doesn’t insulate them against errors: on the contrary, patients catch errors entered by staff all the time. So ultimately it’s better to bring the patient onto the team and educate her. If a problem with records altered by patients–deliberately or through accidental misuse–turns up down the line, digital certificates can be deployed to sign doctor records and output from devices.

The amounts of data we’re talking about get really big fast. Genomic information and radiological images, in particular, can occupy dozens of gigabytes of space. But hospitals are moving to the cloud anyway. Practice Fusion just announced that they serve 150,000 medical practitioners and that “One in four doctors selecting an EHR today chooses Practice Fusion.” So we can just hand over the keys to the patients and storage will grow along with need.

The movement for patient empowerment will take off, as experts in health reform told US government representatives, when patients are in charge of their records. To treat people, doctors will have to ask for the records, and the patients can offer the full range of treatment histories, vital signs, and observations of daily living they’ve collected. Applications will arise that can search the data for patterns and relevant facts.

Once again, the US government is trying to stimulate patient empowerment by requiring doctors to open their records to patients. But most institutions meet the formal requirements by providing portals that patients can log into, the way we can view flight reservations on airlines. We need the patients to become the pilots. We also need to give them the information they need to navigate.

4. Reform will not succeed unless providers conform to practice guidlines

Now that the government is forcing doctors to release informtion about outcomes, patients can start to choose doctors and hospitals that offer the best chances of success. The providers will have to apply more rigor to their activities, using checklists and more, to bring up the scores of the less successful providers. Medicine is both a science and an art, but many lag on the science–that is, doing what has been statistically proven to produce the best likely outcome–even at prestigious institutions.

Patient choice is restricted by arbitrary insurance rules, unfortunately. These also contribute to the utterly crazy difficulty determining what a medical procedure will cost as reported by e-Patient Dave and WBUR radio. Straightening out this problem goes way beyond the doctors and hospitals, and settling on a fair, predictable cost structure will benefit them almost as much as patients and taxpayers. Even some insurers have started to see that the system is reaching a dead-end and are erecting new payment mechanisms.

5. Reform will not succeed unless providers and patients can form partnerships

I’m always talking about technologies and data in my articles, but none of that constitutes health. Just as student testing is a poor model for education, data collection is a poor model for medical care. What patients want is time to talk intensively with their providers about their needs, and providers voice the same desires.

Data and good record keeping can help us use our resources more efficiently and deal with the physician shortage, partly by spreading out jobs among other clinical staff. Computer systems can’t deal with complex and overlapping syndromes, or persuade patients to adopt practices that are good for them. Relationships will always have to be in the forefront. Health IT expert Fred Trotter says, “Time is the gas that makes the relationship go, but the technology should be focused on fuel efficiency.”

Arien Malec, former contractor for the Office of the National Coordinator, used to give a speech about the evolution of medical care. Before the revolution in antibiotics, doctors had few tools to actually cure patients, but they live with the patients in the same community and know their needs through and through. As we’ve improved the science of medicine, we’ve lost that personal connection. Malec argued that better records could help doctors really know their patients again. But conversations are necessary too.

June 20 2012

How the federal government helps health care standards evolve

Health information exchange is on the front lines of cost control and health care improvements. To provide simple tools and channels for hospitals, doctors, and other institutions to exchange data with the government, patients, and each other, the Department of Health and Human Services coordinates an initiative called the Federal Health Architecture (FHA).

Dr. Lauren Thompson, director of the FHA, speaks in this interview about the FHA's accomplishments and the current state of health information exchange.

Topics in the interview include:

  • How the FHA arose as a solution to the problem of exchanging health data, both across government agencies and with partners in the private sector. [Discussed at the 0:45 mark]
  • Status of the Nationwide Health Information Network (NwHIN), which is participating in the NwHIN Exchange, and what the requirements are for participation. [Discussed at the 4:45 mark]
  • Initiatives at the Department of Defense and the Department of Veteran Affairs. [Discussed at the 7:45 mark]
  • Future of the NwHIN Exchange and the CONNECT project, including support for the Direct standard. [Discussed at the 9:45 mark]
  • Cost savings and other benefits offered by the work of the Federal Health Architecture to the health care field. [Discussed at the 13:15 mark]
  • Promoting services to Health Information Exchanges. [Discussed at the 14:45 mark]
  • You can view the entire conversation in the following video:

    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 RADAR

June 12 2012

Data in use from public health to personal fitness

Back in 2010, the first health data initiative forum by the Dept. of Health and Human Services introduced the public to the idea of an agency releasing internal data in forms easy for both casual viewers and programmers to use. The third such forum, which took place last week in Washington, DC, was so enormous (1,400 participants) that it had to be held in a major convention center. Todd Park, who as CTO made HHS a leader in the open data movement, has moved up to take a corresponding role for the entire federal government. Open data is a world movement, and the developer challenges that the HDI forum likes to highlight are standard strategies for linking governments with app programmers.

Todd Park on main stage
Todd Park on main stage.

Following my attendance at a privacy access summit the previous day, the HDI forum made me think of a government bent on reform and an open-minded public crossing hands over the heads of the hidebound health institutions that blunder onward without the benefits of tapping their own data. I am not tossing all hospitals, doctors, and clinics into this category (in fact, I am constantly talking to institutions who work with available data to improve care), but recording and storage of information in health care generally retards anyone interested in change.

The "datapalooza" was already covered on Radar by Alex Howard, so here I'll list some of the observations I made during the parts I attended.

Health and Human Services chooses torrents over leaks

Able to attend the forum only on the first day, I spent a lot of it in a session on HHS data sets at Healthdata.gov because I wanted to know exactly what the department has to offer and how the data is being used.

HHS staff at break-out session
HHS staff at break-out session.

Several things impressed me about the procession of HHS staff that crossed the stage to give five- or ten-minute presentations on data sets. First was the ethos of data sharing that the department heads have instilled. Each staff person showed visible pride in finding data that could be put on the Web. A bit of competitive spirit drives different departments that may have more or fewer resources, and data that comes naturally in a more structured or less structured form. One person, for instance, said, "We're a small division and don't have the resources of the others, but we managed to release several data sets this year and one has an API."

Second, the department is devoting resources to quality. I've heard several complaints in the field about lack of consistency and other problems in public health data. One could hardly avoid such issues when data is being collected from hundreds of agencies scattered across the country. But the people I talked to at the HHS forum had ways of dealing with it, such as by requiring the researchers who collect data to submit it (so that trained professionals do the data entry), and running it through quality checks to look for anomalies.

Third, the department knows that outside developers coming to their site will need extra help understanding the data being collected: what the samples represent, what the scope of collection was, and so forth. In addition to a catalog powered by a Solr search engine, HHS provides direct guidance to the perplexed for those developing apps. They are also adding Linked Data elements to help developers combine data sets.

A few examples of data sets include:

  • The Center for Medicare & Medicaid Services offers aggregate data on emergency visits, hospital readmission rates (a major source of waste in health costs), and performance measurement.

  • The Administration for Children and Families has a Head Start locator that helps parents find services, aggregate data on people who apply for Low Income Home Energy Assistance, etc.

  • The Agency for Healthcare Research and Quality has longitudinal data abut spending on health care and its effect on outcomes, based on an annual survey, plus a service offering statistics on hospital treatments, morbidity, etc.

  • The Assistant Secretary for Planning and Evaluation tracks workforce development, particularly in health IT, and measures the affordability of health care reflected in costs to employers, patients, and the government.

Recently, HHS has intensified its efforts by creating a simple Web interface where its staff can enter data about new data sets. Data can be uploaded automatically from spreadsheets. And a new Data Access and Use Committee identifies data sets to release.

So now we have public health aids like the Community Indicators Data Portal, which maps the use of Medicaid services to poverty indicators, infant mortality, etc.

HealthMap, created by Children's Hospital Boston, is used by a fascinating range of projects. They scoop in huge amounts of data--mostly from news sites, but also blogs, and social networks--in multiple languages around the world, and apply a Bayesian filter to determine what's a possible report of a recent disease outbreak. After a successful flu-tracking program based on accepting reports from the public, they did a dengue-tracking program and, in Haiti, a cholera-tracking program.

But valuable as HHS data is to public health, most of it is not very sexy to the ordinary patient or consumer. If you're curious how your Medicare charges compare with average payments for your county, go ahead and mine the data. But what about something immediately practical, such as finding the best hospital for a procedure?

Recently, it turns out, HHS has been collecting and releasing data on that level, such as comparative information on the quality of care at hospitals. So a datapalooza like the HDI forum really takes on everyday significance. HHS also provides the Healthcare.gov site, with services such finding insurance plans for individuals and small groups.

Other jurisdictions are joining the health data movement. Many countries have more centralized systems and therefore can release large amounts of data about public health. The United Kingdom's National Health Service was featured at the HDI forum, where they boasted of posting 3,000 health indicators to their web site.

The state of Louisiana showed off a cornucopia of data, ranging from user restaurant ratings to ratings of oyster beds. Pregnancy risk factors, morbidity rates, etc. are broken down by race, sex, and other demographics. The representative freely admitted that the state has big health problems, and urgently called on developers to help it mine its data. The state recently held a "Cajun codefest" to kick off its effort. HHS also announced five upcoming local datapaloozas in other states around the U.S.

I talked to Sunnie Southern, a cofounder of a Cincinnati incubator called Innov8 for Health. They offer not only challenges for new apps, but guidance to help developers turn the apps into sustainable businesses. The organization also signs up local hospitals and other institutional users to guarantee a market to app developers. Southern describes Innov8 for Health as a community-wide initiative to support local developers and attract new ones, while maintaining deep roots among multiple stakeholders across the health care, university, startup, investors, and employer stake holders. At the inaugural class, which just took place, eight companies were chosen to receive intensive mentoring, introductions and connections to potential customers and investors, and $20,000 to start their company in 12 weeks. Health data is a core element.

How far can a datapalooza take the health care field?

Health apps are a fast-growing segment of mobile development, and the government can certainly take some of the credit, along with VC and developer recognition that there's a lot of potential money to be made fixing health care. As Todd Park said, "The health innovation ecosystem is beautifully chaotic, self-propelled, and basically out of control." That means the toothpaste can't be put back in the tube, which is a good thing.

The HDI forum is glitzy and exciting--everybody in health care reform shows up, and the stage show is slickly coordinated--but we must remember the limits of apps in bringing about systemic change. It's great that you can use myDrugCo$ts.com to find a discount drug store near you. Even better, if your employer hooks you up to data sets provided by your insurer, myDrugCo$ts.com can warn you about restrictions that affect costs. But none of this will change the crazy pricing in the insurance plans themselves, or the overuse of drugs in medicine, or the inefficient development and testing methods that lead to high medication prices in the first place.

Caucus of Society for Participatory Medicine and friends
Caucus of Society for Participatory Medicine and friends.

Transparency by one department on one level can lead to expectations of transparency in other places too. As pricing in health care becomes more visible, it will become less defensible. But this requires a public movement. We could do great things if we could unlock the data collected by each hospital and insurance agency, but they see that data as their competitive arsenal and we are left with a tragedy of the anti-commons. It would be nice to say, "You use plenty of public data to aid your decision-making, now reciprocate with some of your own." This can be a campaign for reformers such as the Society for Participatory Medicine.

At the HDI forum, United Healthcare reported that they had enough data to profile patients at risk for diabetes and brought them in for a diabetes prevention program. This is only a sample of what can be done with data that is not yet public.

Aetna presenter shows CarePass on the main conference stage al at health care conference
Aetna presenter shows CarePass on the main conference stage.

Aetna is leading the way with a service called CarePass, currently holding a developer challenge. CarePass offers Aetna's data through an API, and they partner with other major data centers (somewhat as Microsoft does with HealthVault) to hook up data. Practice Fusion is also offering some data to researchers.

Even those bright-faced entrepreneurs launching businesses around data from HHS and elsewhere--certainly their success is one of the goals of the open data movement, but I worry that they will recreate the silos of the health care field in the area of patient data. What are they collecting on us as we obsessively enter our personal statistics into those devices? Who will be able to use the aggregate data building up on their servers?

So there are hints of a qualitative change that can come from quantitative growth in the release and reuse of health care data. The next step involves the use of personal data, which raises its own litany of issues in quality and privacy. That will be the subject of the last posting in this series.

June 11 2012

Health reform leaders focus on patient access to records as key barrier

A convocation of trend-setters and organizational leaders in U.S. health care was called together in Washington last Monday, June 4. The attendees advised two government organizations driving health reform--the Office of the National Coordinator at the Dept. of Health and Human Services, and the Dept. of Veteran Affairs--how to push forward one of their top goals, patient engagement.

The results of the meeting, to me, demonstrated mostly the primitive state of communications and coordinated care in the U.S. health system. In an earlier posting I discussed the sorry state of health data exchange, and Monday's patient access summit centered on the same factors of siloing and data hoarding as barriers to patient engagement.

Farzad Mostashari, the National Coordinator for Health Information Technology, tried to set the scope of the meeting as an incubator to suggest practical ways patients could use the data they get from health providers. (As I'll explain later, we also touched on data patients generate themselves.) His reasoning, which I endorse, is that patients currently can't do much with data except keep it somewhere and pass it to other health providers, so in order to engage them we need to provide tools for them to improve their health with this data.

But the pulse of the 75 or so attendees gave quite a different message: that we're nowhere near ready to discuss uses of data, and that our efforts at patient engagement should start with getting the data to the patients in the first place.

Several attendees have already blogged about various aspects of the meeting:

  • Brian Ahier summarizes the purpose and outcomes.

  • Dave Chase urges the government to create an environment that encourages the release of data to the patient.

  • Keith Boone focused on some interesting statements and ideas aired at the meeting.

In this posting, I'll discuss:

Why patient access is so important, and why it doesn't happen

The notions of patients pouring over doctors' notes, correlating their own test results, and making demands on their care providers may carry a faint whiff of utopianism, but thousands of patients do these things every day--and do them even when deprived of the electronic aids that could make these activities natural. The people in the room for the patient access summit were by no means utopians. They are intense movers in the health care field with deadlines to meet and budgets to allocate. So when they call for patient access to data, it's because they all see it as critical to solving the quality and cost problems their own organizations face.

Patient engagement is critical because most health care takes place outside the doctor's office or operating room. Patients need to take control of their own lifestyles for the problems that put a lot of strain on our health care system, such as obesity. They need to follow through on post-release instructions and monitor themselves for symptoms.

And in the silo'd state of today's health system, the patients need to make sure their data gets to health providers. We heard over and over at the patient access summit how patients have entered treatment centers without the information needed to treat them, how doctors would refuse point-blank (in violation of the law) to give patients their folders, and how patients received inadequate care because of the lack of information.

Patient participation in health care is not only good for the individuals who do it, but are crucial for prying open the system as a whole. The providers, vendors, and insurers are moving too slowly. Their standards and electronic health records lack fields for all the data people are generating through their Fitbits and Zeos, and they don't have pathways for continuously uploading patient-generated data. This lapse can be turned into a plus: device manufacturers and programmers out in the field will develop new, more flexible, more robust standards that will become the next generation of EHRs and personal health records. A strong push from empowered patients can really change the way doctors work, and the associated costs.

Major topics of debate

Opinions differ about the roles of electronic records, interchange systems, culture, and business models in the recalcitrance of doctors to release patient data, which I'll discuss in the last section of the article. Getting the answer to these questions right should determine the strategy government and consumers use to breach the silos. But the consensus at the patient access summity was that we need to pursue these strategies fast, and that the fate of the rest of health care reform will rest on our success.

The first half of the Washington meeting meandered through various classic areas under constant debate in the health care field. This seemed necessary so that the participants in the summit could feel each other out, untangle some of their differences and ultimately come to a position of trust so they could agree on the topics in the previous section. I noted the following topics that threaded through the debate without resolution.

Technology versus culture

Debates come up all the time when organizational change is on the agenda about the importance of the technologies people use versus their workflows, attitudes, and willingness to change. I find the discussions silly because people usually find themselves pushed to an either-or position and that just doesn't make sense. Of course technology can facilitate change, and of course the technology will be a big waste of time and money if the human participants fail to understand the behavior changes they need to make along the way.

But the Washington attendees raised these issues as part of the strategy-setting I mentioned earlier. Certainly, the government would prefer to avoid creating or mandating the use of certain technologies. The question is whether the ONC and VA can set goals and leave it up to the market to find the way.

Sometimes the health care field is so distorted and dysfunctional that the government feels it has to step in, such as when HHS created CONNECT and then Direct. Without these, the health care providers and health information exchanges (HIEs) would claim that exchanging patient data was an expensive or intractable problem. One might also interpret the release of VistA and BlueButton to the general public as the VA's statements about how health care should be conducted.

So Mostashari's original call for actions that patients could take fits into the technology end of the debate. By suggesting technological paths forward, we can effect cultural change. For instance, if a patient uses an app or web site to view all the potential reactions between the drugs she takes (and I heard one estimate this week that people in their 80s take between five and eight medications), she can warn her own doctor about an adverse reaction.

Ultimately, the working groups that today's meeting settled on included a lot of technological innovation.

The need for standards

Standard setting is another perennial area for disagreement, because premature standard-setting, like premature optimization, can have an effect opposite to what you want. If we took all the efforts that companies put into standards that bombed in the marketplace and devoted the resources over the decades to competition between innovations, we might have an explosion of new technologies. So even if you accept the value of technology to effect culture change, you can ask where and when can governments and standards committees can intervene positively.

And this caution applies to health care too. The old guard of EHRs and HIE suffer from a lack of (useful) standards. But I mentioned earlier, an exciting explosion of patient-centered apps and devices is developing in the absence of standards. The Washington meeting ended up endorsing many standard-setting efforts, although these applied mostly to mature fields such as EHRs.

Transfer standards versus data format standards

Mixed up in the debate over the timing of standards was a distinction between standards used for sending data around and standards used to represent the data. The former are called protocols in the communications field. HTTP is a transfer standard, for instance, whereas as HTML is a data format standard. Both are needed to make the World Wide Web operate. And both ended up part of the action items from the patient access summit.

Privacy versus data availability

As I reported from the first health privacy conference, health care advocates argue over the importance of privacy. At the patient access summit, everybody who spoke on this topic prioritized the exchange of data. Privacy concerns are the magic amulet that providers wave at patients to ward off their requests for data. But in fact, the much-derided Health Insurance Portability and Accountability Act (HIPAA) requires providers to give patients data: that's what the terms Portability and Accountability in the name refer to. The providers are required to take reasonable steps to preserve privacy--and the Direct project aims to simplify these--but the patient can waive even these modest safeguards if he or she is anxious to get the data quickly.

Given our skepticism toward claims of security concerns, a bit of security theater we encountered as we entered the conference center is illustrative. We were warned ahead of time that the facility was secure and told to bring a government-issued photo ID. Indeed, the guard checked my ID and looked at my face when I entered, but nobody checked my name against a list to see whether I was actually supposed to be there.

A later article in this series will explore the relationships between privacy, security, patient access, accuracy, and accountability that create a philosophy of control.

Motivations for doctors versus patients

Another topic at the patient access summit that reflected a dilemma in the health care field is how much effort to aim at the doctors versus the patients, when trying to change the behavior of both. Many patients try to engage as adults in their own care and are stymied by resistant doctors. And as I pointed out in an earlier posting, the patients who need the most lifestyle changes ignore their own perilous conditions. So these considerations would suggest focusing on motivations for doctors to change.

But a market approach would suggest that, when enough patients want to have a say in their care, and have the means to choose their doctors, change will reach the examination rooms. The conclusions of the patient access summit did not reflect any particular positions along this spectrum. Participants pointed out, however, that institutions such as Kaiser Permanente who wanted patients to use their portals invested a lot into advertising them.

Pushing versus pulling data

Telephone calls, email, and online chats are push technology, in that the person sending them decides when (approximately) they are delivered. The web is a pull technology, because the recipient visits the site at his or her choosing. In health exchange, one doctor may push a patient's records to the next provider, or the next provider can pull them when the patient is due to arrive. Sometimes articulated unhelpfully as a battle for push versus pull, our discussion revealed that each had its uses.

The issue is especially salient when a patient has records stored by multiple institutions. Currently, a patient can pull records from each and (if they use a common format such as BlueButton) combine them. In fact, a mobile app named iBlueButton allows a patient to show data from providers to a doctor during a visit. But it would be much better for each institution to push information to the patient as it's added to the institution's record. This would bring us closer to the ideal situation where records are stored by a site on behalf of the patient, not the doctor.

Three action items from today's meeting

Now we get to the meat of the summit. Leaders asked participants to define areas for research and to make commitments to incorporate the results of the research teams into their products and activities. Three action items were chosen, and two were excluded from consideration at this round.

Automated downloads

A number of organizations, such as Aetna Health Plans have adopted the BlueButton format created at the VA. In the line-up of data formats available for storing health information, BlueButton is shockingly casual. But it's list of plain-text fields is easy to read and unfrightening for patients. It is also undeniably popular, as the number of VA patients downloading their data approaches one million. So the immediate impetus for the first goal of the patient access summit, dubbed "automating BlueButton," is to keep patients' records up to date and integrated by pushing data to them from institutional EHRs.

But BlueButton can be massaged into other formats easier for programs to manipulate, the so the "automating BlueButton" task really refers to the entire movement to empower patients who want control over their records. One way to state the principle is that every action in a hospital's or doctor's EHR will be accompanied by an update to the patient's copy of the data. Hopefully this movement will soon lead to simple but program-friendly XML formats, robust transfer standards such as Direct, and universal integration of hospital and clinic EHRs with patient health records.

Identification and access technologies

Congress has ruled out a single nation-wide ID for patients, thanks to worries from privacy advocates that the system could facilitate identity theft and commercial data mining. Some have proposed a Voluntary Universal Healthcare Identifier (VUHID), but that's encumbered with the same problems. Identification systems used nowadays for HIE are cumbersome and error-prone, and revolve around cooperating health care institutions rather than individual patients with few resources. Individual hospitals can verify patients' email addresses and passwords when they come in for treatment, but in-person authentication doesn't scale to data exchange.

A more rational solution revolves around certificates and digital signatures, which security-conscious institutions in government and industry have used for years. The has gotten a bit of a bad rep because it has been poorly implemented on the Web (where browsers trust too many certificate authorities, and system administrators fail to keep accurate signatures) but the health care system is quite capable of implementing it properly. The Direct Trust project is creating a set of practices and hopefully will stimulate the industry to create such a system. In fact, I think Direct Trust is already addressing the issues listed under this task. OAuth was also mentioned repeatedly at the summit. the National Strategy for Trusted Identities in Cyberspace was also mentioned.

The questions of identifying oneself and of authorizing access to data are linked, so they were combined in a single working group even though they are somewhat distinct technically.

Standards for content

The final task approved at the patient access summit was to work further on data standards. It was late in the day and the task was defined only in a very broad manner. But I think it's an important leg of the patient access stool because current standards for patient data, such as HL7's CDA, were meant for communicating the results of clinical interventions. They'll be hard to use when patients generate and store their own data, both because they lack the appropriate fields and because they aren't designed for continuous uploads of data. Segmented access (allowing providers to see certain records while withholding records that the patient considers sensitive) was also mentioned.

Patient-generated data

I mentioned at the summit that patients are starting to generate data that could be invaluable in their treatment, and that the possession of this data gives them leverage. Doctors who are serious about treating common chronic issues such as hypertension, or any condition that can be improved through careful monitoring, will want the patient data. And patients can use their leverage to open up doctors' EHRs. As patients got more involved in their care, the very term "provider" (meaning a doctor or other professional who provides diagnosis and treatment) will become obsolete. Patients will be co-providers along with their professional team.

Patient-generated data got some attention during the day, but the attendees concluded that not enough time had been spent on it to turn it into an action item.

Privacy

The final issue on the agenda for the day was privacy. I estimate that we spent a full half-hour at one point, in addition to which it was raised at other times. Because I am covering privacy in the third article of this series, I'll simply say here that the attendees were most concerned about removing excuses for data exchange, and did not treat risks to privacy as a problem to be fixed.

What did the patient access summit accomplish?

I'm proud that the ONC and VA created a major discussion forum for patient access. I think the issues that came up were familiar to all participants in the meeting, and that ONC together with industry partners is already moving forward on them. The summit provided affirmation that the health care field as a whole takes the issues seriously, and the commitments that will arise from the meeting will lend more weight to government efforts.

And a lot of the time, knowledgeable patients need to know that progressive health care leaders and the government have "got their back" as they demand their rights to know what's going on in their bodies. The Office of Civil Rights has publicly championed the patients' right to their data (in fact, the biggest fine they've levied for a HIPAA violation concerns a refusal to release data to a patient), and the initiatives we all supported last Monday will give them more tools to use it.

Regulations can make a difference. A representative from Practice Fusion told me they offered a patient download option on their EHR service years ago, but that most doctors refused to allow it. After the ONC's meaningful use regulations required patient access, adoption by doctors went up 600%.

While laying the groundwork for patient access, we are ready to look forward to wonderful things patients and providers can do with data. That will be the subject of my next article in the series, which will cover the health data initiative forum I attended the next day.

February 29 2012

Report from HIMSS 12: wrap-up of the largest health IT conference

This is a time of great promise in health care, yet an oppressive atmosphere hung over much of href="http://www.himssconference.org/">HIMSS. All the speakers--not least the government representatives who announced rules for the adoption of electronic health records--stressed commendable practices such as data exchange, providing the patient with information, and engaging with the patient. Many berated hospitals, doctors, and vendors for neglecting the elements that maintain health. But the thrust of most sessions was on such details as how to convert patient records to the latest classification of diseases (ICD-10).

Intelligent Hospital pavilion shows off tempting technology
Intelligent Hospital pavilion shows off tempting technology.

I have nothing against ICD-10 and I'm sure adopting it is a big headache that deserves attention at the conference. The reason I call the atmosphere oppressive is that I felt stuck among health care providers unable to think long-term or to embrace the systems approach that we'll need to cure people and cut costs. While some health care institutions took the ICD-10 change-over seriously and put resources into meeting the deadline, others pressured the Dept. of Health and Human services to delay implementation, and apparently won a major reprieve. The health IT community, including HIMSS, criticized the delay. But resistance to progress usually does not break out so overtly, and remains ingrained in day-to-day habits.

But ICD-10 is a sideline to the major issue of Stage 2 meaningful use. Why, as I reported on Wednesday, were so many of the 35,000 HIMSS attendees wrapped up in the next step being forced on them by the federal government? The scandal is that these meaningful use concepts (using data to drive care, giving care-givers information that other care-givers have collected about the patient) have to be forced on them. Indeed, institutions like Kaiser Permanente that integrated their electronic records years ago and concentrated on the whole patient had relatively little work to do to conform to Stage 1, and probably have the building blocks for Stage 2 in place. And of course these things are part of the landscape of health care in other countries. (The proposed regulations were finally posted last Thursday.)

Recipients of Regina Holliday jackets record patient involvement stories
Recipients of Regina Holliday jackets record patient involvement stories.

Haven't our providers heard that an ounce of prevention is worth a pound of cure? Don't well-educated and well-paid executives invest in quality measures with the expectation that they'll pay off in the long run? And aren't we all in the field for the good of the patients? What is that snickering I hear?

Actually, I don't accept the premise that providers are all in it for the money. If so many are newly incentivized to join the government's program for a mere $15,000 per doctor (plus avoiding some cuts in Medicare payments), which is a small fraction of the money they'll have to spend implementing the program, they must know that it's time to do the right thing. Meaningful use can be a good framework to concretize the idealistic goals of health care reform, but I just wish the vendors and doctors would keep their eyes more on the final goal.

Redwood MedNet in Northern California is an example of a health information exchange that adopted standards (CONNECT, before the Direct project was in place) to simplify data exchange between health providers. Will Ross of Redwood MedNet told me that qualifying for Stage 2 would be simple for them, "but you won't hear that from many vendors in this exhibit hall."

Annual surveys by Family Practice Management journal about their readers' satisfaction with EHRs, reviewed in one HIMSS session, showed widespread dissatisfaction that doesn't change from year to year. For instance, 39% were dissatisfied with support and training, although a few vendors rated quite high. Still, considering that doctors tend to veer away from open source solutions and pay big bucks for proprietary ones out of a hope of receiving better support and training, they deserve better. It's worth noting that the longer a practice uses its system, the more they're likely to express satisfaction. But only 38% of respondents would purchase the same systems now if they weren't already locked in.

That's the big, frustrating contradiction at HIMSS. The vendors have standards (HL7 and others), they've been setting up health information exchanges (under various other names) for years, they have a big, popular interoperability lab at each conference--and yet most patients still have to carry paper records and CDs with images from one doctor to another. (A survey of HIMSS members showed that one-quarter allowed access by patients to their data, which is an advance but still just a start.) The industry as a whole has failed to make a dent in the 90,000 to 100,000 needless deaths that occur in treatment facilities each year. And (according to one speaker) 20% of patients hospitalized under Medicare have to return to the hospital shortly after discharge.

Omens of change

Suffice it say that by my fourth day at HIMSS I was not happy. Advances come, but slowly. Examples of developments I can give a thumbs-up to at HIMSS were data sharing among physicians who use Practice Fusion, a popular example of a growing move to web services for electronic records, and a CardioEngagement Challenge funded by Novartis to encourage at-risk patients to take more interest in their health. The winner was a Sensei mobile app that acts as an automated coach. Sensei CEO Robert Schwarzberg, a cardiologist, told me had put together phone-in coaching services for heart patients during the years before mobile apps, and was frustrated that these coaches were available less than once a week when what patients needed was round-the-clock motivation. Sensei Wellness is one of the many mobile apps that make both patients and doctors more connected, and HIMSS quite properly devoted a whole section of the exhibit floor to them.

Talking about Sensei Wellness with Dr. Robert Schwarzberg
Talking about Sensei Wellness with Dr. Robert Schwarzberg.

I dropped by the IBM booth for the obligatory demo of Watson's medical application, and some background from Dr. Josko Silobrcic. I also filled in some of this report from an earlier conversation with tech staff.

Medical diagnosis involves more structured data than solving Jeopardy riddles, structure that appears mostly in the form of links between data sets. For instance, medicines are linked to diagnoses, to lab results, and to other medicines (for instance, some drugs are counter-indicated when the patient is taking other drugs). Watson follows these relationships.

But because Watson is a natural language processing application--based on UIMA, which IBM donated to the Apache Foundation--it doesn't try to do much reasoning to pick out the best diagnosis or treatment, both of which are sometimes requested of it. Instead, it dumps huge indexes of medical articles into its data stores on one side, and takes in the text about the patient's complaint and doctor's evaluation on the other. Matching them up is not so different from a Jeopardy question, after all. Any possible match is considered and kept live until the final round of weighing answers, even if the chance of matching is near zero.

Dr. Josko Silobrcic before Watson demonstration
Dr. Josko Silobrcic before Watson demonstration.

Also because of the NLP basis for matching, there is rarely a need to harmonize disparate data taken in from different journals or medical sources.

I assumed that any processing that uses such a large data set and works so fast must run on a huge server farm, but the staff assured me it's not as big as one would think. For production use, of course, they'll need to take into account the need to scale. The medical informatics equivalent of a Christmas rush on sales would be an epidemic where everybody in the region is urgently hitting Watson for critical diagnoses.

Coming to peace

Healing came to me on my last day at HIMSS, at too related conferences off to the side of the main events: a meeting of Open Health Tools members and the eCollaboration forum, run by health activists who want to break down barriers to care. Both groups have partnerships with HIMSS.

Open Health Tools positions itself as an umbrella organization for projects making free software for a lot of different purposes in health care: recording, treatment, research and more. One illustrative project I got to hear about at their meeting was the Medical Imaging Network Transport (MINT), which Johns Hopkins is working on in coordination with other teams

MINT cuts down on the transfers of huge images by doing some processing in place and transferring only portions of the data. Switching to modern storage formats (XML and JSON) and better methods of data transfer also reduces waste. For instance, current DICOM vendors transmit images over TCP, which introduces more overhead than necessary when handling the packet losses engendered by transmitting files that are several gigabytes in size. MINT allows UDP and other protocols that are leaner than TCP.

Best of all, MINT DICOM images can be displayed through HTML5, which means any browser can view them in good resolution, there is no need to install a specialized viewer at each location where the doctor is checking the image, and dependence on proprietary software is reduced. (The same reliance on standard browsers is also claimed by eMix in a recent interview.

At the eCollaboration forum, E-patient Dave DeBronkart reported that being an engaged patient is still swimming upstream. It's hard to get one's records, hard to find out what treatments will cost, and hard to get taken seriously as an adult interested in monitoring one's own care. Meg McCabe of Aetna says that insurers need to offer more sophisticated guidance to patients trying to choose a health provider--simple lists of options are confusing and hard to choose from.

One speaker warned providers that if they try to open their data for collaborative care, they may find themselves hampered by contracts that maintain vendor ownership of EHR data. But speakers assured us vendors are not evil. The issue is what the providers ask for when they buy the EHR systems.

Here's the strange thing about the eCollaboration forum: they signed up enough people to fill the room ahead of time and left many potential attendees lamenting that they couldn't get in. Yet on the actual day of the event, there were about eight empty seats for every attendee. Maybe HIMSS attendees felt that had to devote all their time to the stage 2 regulations, previously mentioned. But I take the disappointing turn-out as a sign of the providers' and vendors' lack of commitment to change. Shown a dazzling roster of interesting talks about data exchange, open record sharing, and patient engagement, they're quick to sign up--but they don't show up when it counts.

As members of the general public, we can move the health care field forward by demanding more from our providers, at the point where we have some influence. Anyone looking for concrete guidance for increasing their influence as a patient can try e-Patients Live Longer: The Complete Guide to Managing Health Care Using Technology, by Nancy B. Finn.

Public attention and anger have been focused on insurers, who have certainly engaged in some unsavory practices to avoid paying for care--but nothing as destructive as the preventable errors and deaths caused by old-fashioned medical practices. And while economists complain about the 30 cents out of every dollar wasted in the American hodge-podge of payment systems, we know that unnecessary medical procedures or, conversely, preventative steps that were omitted, also suck up a lot of money. One speaker at the eCollaboration forum compared the sky-rocketing costs of health care and insurance to a financial bubble that can't last. Let's all take some responsibility for instituting better medical and reporting systems so the costs come down in a healthy manner.

Other articles about HIMSS were posted last Tuesday and Wednesday.

February 23 2012

Report from HIMSS 2012: toward interoperability and openness

I was wondering how it would feel to be in the midst of 35,000 people whose livelihoods are driven by the decisions of a large institution at the moment when that institution releases a major set of rules. I didn't really find out, though. The 35,000 people I speak of are the attendees of the HIMSS conference and the institution is the Department of Health and Human Services. But HHS just sort of half-released the rules (called Stage 2 of meaningful use), telling us that they would appear online tomorrow and meanwhile rushing over a few of the key points in a presentation that drew overflow crowds in two rooms.

The reaction, I sensed, was a mix of relief and frustration. Relief because Farzad Mostashari, National Coordinator for Health Information Technology, promised us the rules would be familiar and hewed closely to what advisors had requested. Frustration, however, at not seeing the details. The few snippets put up on the screen contained enough ambiguities and poorly worded phrases that I'm glad there's a 60-day comment period before the final rules are adopted.

There isn't much one can say about the Stage 2 rules until they are posted and the experts have a chance to parse them closely, and I'm a bit reluctant to throw onto the Internet one of potentially 35,000 reactions to the announcement, but a few points struck me enough to be worth writing about. Mostashari used his pulpit for several pronouncements about the rules:

  • HHS would push ahead on goals for interoperability and health information exchange. "We can't wait five years," said Mostashari. He emphasized the phrase "standard-based" in referring to HIE.

  • Patient engagement was another priority. To attest to Stage 2, institutions will have to allow at least half their patients to download and transfer their records.

  • They would strive for continuous quality improvement and clinical decision support, key goals enabled by the building blocks of meaningful use.

Two key pillars of the Stage 2 announcement are requirements to use the Direct project for data exchange and HL7's consolidated CDA for the format (the only data exchange I heard mentioned was a summary of care, which is all that most institutions exchange when a patient is referred).

The announcement demonstrates the confidence that HHS has in the Direct project, which it launched just a couple years ago and that exemplifies a successful joint government/private sector project. Direct will allow health care providers of any size and financial endowment to use email or the Web to share summaries of care. (I mentioned it in yesterday's article.) With Direct, we can hope to leave the cumbersome and costly days of health information exchange behind. The older and more complex CONNECT project will be an option as well.

The other half of that announcement, regarding adoption of the CDA (incarnated as a CCD for summaries of care), is a loss for the older CCR format, which was an option in Stage 1. The CCR was the Silicon Valley version of health data, a sleek and consistent XML format used by Google Health and Microsoft HealthVault. But health care experts criticized the CCR as not rich enough to convey the information institutions need, so it lost out to the more complex CCD.

The news on formats is good overall, though. The HL7 consortium, which has historically funded itself by requiring organizations to become members in order to use its standards, is opening some of them for free use. This is critical for the development of open source projects. And at an HL7 panel today, a spokesperson said they would like to head more in the direction of free licensing and have to determine whether they can survive financially while doing so.

So I'm feeling optimistic that U.S. health care is moving "toward interoperability and openness," the phrase I used in the title to his article and also used in a posting from HIMSS two years ago.

HHS allowed late-coming institutions (those who began the Stage 1 process in 2011) to continue at Stage 1 for another year. This is welcome because they have so much work to do, but means that providers who want to demonstrate Stage 2 information exchange may have trouble because they can't do it with other providers who are ready only for Stage 1.

HHS endorsed some other standards today as well, notably SNOMED for diseases and LRI for lab results. Another nice tidbit from the summit includes the requirement to use electronic medication administration (for instance, bar codes to check for errors in giving medicine) to foster patient safety.

October 21 2011

Why geeks should care about meaningful use and ACOs

Healthcare reform pairs two basic concepts:

  • Change incentives: lower costs by paying less for "better" care not "more" care
  • Use software to measure whether you are getting "better" care

These issues are deeply connected and mostly worthless independently. This is why all geeks should really care about meaningful use, which is the new regulatory framework from the Office of the National Coordinator of Health Information Technology (or ONC for short) that determines just how doctors will get paid for using electronic health records (EHR).

The clinical people in this country tend to focus on meaningful use incentives as "how do I get paid to install an EHR" rather than seeing it as deeply connected to the whole process of healthcare reform. But any geek can quickly see the bottom line: all of the other healthcare reform efforts are pointless unless we can get the measurement issue right.

Health economists can and do go on and on about whether the "individual mandate" will be effective. Constitutional law experts fret about whether the U.S. federal government should be able to force people to purchase insurance. We are all concerned about issues like the coverage of pre-existing conditions. Hell, I am certainly in the 99%.

Make no mistake, the core problem with healthcare in the United States is that costs are out of control. Under the current system, absent better health information technology, any kind of major system change — like the individual mandate — will simply assure that you get lots more of what you already have. That would be a disaster.

The only way to make healthcare in the U.S. both better and cheaper is to use health information technology. I recently was able to have a whiteboard session with Dr. Farzad Mostashari, and he drew out his view of the whole reform system. It was nice to be able to have such an intimate explanation, but I can think of nothing that he told me that he does not also say in his frequent public appearances (he was awesome at Health 2.0). He talked about this issue as one of "levers." His point was simple: pulling one lever alone does nothing.

One of the levers on his whiteboard was something called Accountable Care Organizations (ACO), which is term that any technologist who cares about government or healthcare needs to get familiar with. The ACO is a new twist on Capitation. The idea is simple: lets pay doctors for keeping people healthy rather than paying them to treat the sick. But capitation has a bad name in the U.S. because of its abuse by Health Management Organizations (HMOs).

The only differences between an HMO and an ACO are the quality of data systems they will be required to use and the level of detail they will be required to report as a result. You might think of an ACO as the organizational vehicle that healthcare reform will move forward in.

With all of that context, technologists can now intelligently read news regarding the changes in meaningful use requirements for ACOs. For those not wishing to delve further, the news is pretty basic: the rules for ACOs around meaningful use have been made a little easier in the final ACO rule.

The final rule gives more time for ACOs to achieve meaningful use in some cases, and that is generally a good thing. Meaningful use seems simple to technologists, but the real-world rural medical practices and small offices that will need to implement it have very inconsistent computer skills. One of the most important issues for meaningful use is to go at the right speed — and for the most part, that should be as fast as possible ... but no faster. Don Berwick (a legend in patient safety circles) explained that the final ACO rule relaxed the meaningful use requirements in response to a "mountain" of comments.

Generally, this is another example of consistently reasonable policy decisions coming from the meaningful use team at ONC. I grew up Republican/Libertarian/Texan and so it seems pretty strange to admit this, but the meaningful use regulations are good government. It is a core component (the geek component) of healthcare reform, and that healthcare reform will be painful. There is just no way around it.

As geeks, we can all call our local congressional representatives and say "this meaningful use thing seems to be going OK."

I'm pretty sure that's not a call they get a lot.

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 21 2011

David Blumenthal lauds incrementalism at forum on electronic health records

Anyone who follows health issues in the U.S. has to be obsessed with the workings of the Office of the National Coordinator (ONC). During the critical early phases of implementing HITECH and meaningful use, the National Coordinator himself was Dr. David Blumenthal, who came to speak yesterday in the Longwood medical area in Boston.

A long-time Bostonian, where he moved up from being a primary care physician, Blumenthal is now back at Mass General and Harvard Business School. Most of his speech yesterday was a summary of the reasoning behind meaningful use, but some off-the-cuff remarks at the end, as well as vigorous discussion during a following panel, provided some interesting perspectives. Best of all was hearing a lot of facts on the ground. These helped explain the difference between EHRs in theory and in practice.

Which comes first, electronic records or standard formats?

There were a lot of complaints at the forum about the lack of interoperability between electronic health records. Blumenthal declared twice that pushing doctors to adopt EHRs was a good idea because we have to have our information digitized before we can think of interchanging it. Coming from the perspective of having seen systems and standards develop--and having seen the mess that results from products out of sync with standards in areas ranging from CORBA to browsers--I disagree with this claim. Luckily, Blumenthal's actual work didn't match the simplistic "digitize first" approach. The ONC built some modest requirements for interoperability into the first stage of meaningful use and plans to ramp these requirements up quickly. Furthermore, they're engaging in intensive negotiations with industry players over EHR standards (see, for instance, my write-up of a presentation by John Halamka last May) and worked quite early on the ground-breaking CONNECT and Direct projects for information exchange.

I understand that an ideal standard can't be expected to spring from the head of Zeus. What perhaps the standards proponents should have worked on is a separation of formats from products. Most EHRs reflect an old-fashioned design that throws together data format, architecture, and user interface. Wouldn't it be great to start the formats off on their own course, and tell EHR vendors to design wonderful interfaces that are flexible enough to adapt to format changes, while competing on providing clinicians with the best possible interface and workflow support? (Poor workflow was another common complaint at last night's forum.) That's the goal of the Indivo project. I interviewed Daniel Haas from that project in June.

Incrementalism in EHRs: accepting imperfection

Perhaps Blumenthal's enthusiasm for putting electronic records in place and seek interoperability later may reflect a larger pragmatism he brought up several times yesterday. He praised the state of EHRs (pushing back against members of the audience with stories to tell of alienated patients and doctors quitting the field in frustration), pointing to a recent literature survey where 92% of studies found improved outcomes in patient care, cost control, or user satisfaction. And he said we would always be dissatisfied with EHRs because we compare them to some abstract ideal

I don't think his assurances or the literature survey can assuage everyone's complaints. But his point that we should compare EHRs to paper is a good one. Several people pointed out that before EHRs, doctors simply lacked basic information when making decisions, such as what labs and scans the patient had a few months ago, or even what diagnosis a specialist had rendered. How can you complain that EHRs slow down workflow? Before EHRs there often was no workflow! Many critical decisions were stabs in the dark.

Too much content, too much discontent

Even so, it's clear that EHRs have to get better at sifting and presenting information. Perhaps even more important, clinicians have to learn how to use them better, so they can focus on the important information. One member of the audience said that after her institution adopted EHRs, discharge summaries went from 3 pages to 10 pages in average length. This is probably not a problem with EHRS, but with clinicians being lazy and taking advantage of the cut-and-paste function.

The computer was often described as a "third person in the room" during patient visits, and even, by panelist and primary care physician Gerard Coste, as a two-year-old who takes up everybody's attention. One panelist, law professor and patient representative Michael Meltsner, suggested that medical residents need to be trained about how to maintain a warm, personal atmosphere during an interview while looking up and entering data. Some people suggested that better devices for input and output (read: iPads) would help.

Blumenthal admitted that electronic records can increase workloads and slow doctors down. "I've said that the EHR made me a better doctor, but I didn't say it made me a faster one." He used this as a lead-in to his other major point during the evening, which is that EHRs have to be adopted in conjunction with an overhaul of our payment and reward system for doctors. He cited Kaiser Permanente (a favorite of health care reformers, even though doctors and patients in that system have their share of complaints) as a model because they look for ways to keep patients healthy with less treatment.

While increasing workloads, electronic records also raise patient expectations. Doctors are really on the hook for everything in the record, and have to act as if they know everything in it. Similar expectations apply to coordination of care. Head nurse Diane L Gilworth said, "Patients think we talk to each other much more than we do." The promise of EHRs and information interchange hasn't been realized.

New monitoring devices and the movement for a patient centered medical home will add even more data to the mix. I didn't ask a question during the session (because I felt it was for clinicians and they should be the ones to have their say), but if I could have posed a question, it would be this: one speaker reminded the audience that the doctor is liable for all the information in the patient's record. But the patient centered medical home requires the uploading of megabytes of data that is controlled by the patient, not the doctor. Doctors are reluctant to accept such data. How can we get the doctor and patient to collaborate to produce high-quality data, and do we need changes in regulations for that to happen?

A plea for an old-fashioned relationship

One theme bubbled up over and over at yesterday's meeting The clinicians don't want to be dazzled by more technology. They just want more time to interview patients and a chance to understand them better. Their focus is not on meaningful use but on meaningful contact. If EHRs can give them and their patients that experience, EHRs are useful and will be adopted enthusiastically. If EHRs get in the way, they will be rejected or undermined. This was an appropriate theme for a panel organized by the Schwartz Center for Compassionate Healthcare.

That challenge is harder to deal with than interchange formats or better I/O devices. It's at the heart of complaints over workflow and many other things. But perhaps it should be at the top of the EHR vendors' agendas.

July 30 2011

Report from Open Source convention health track, 2011

Open source software in health care? It's limited to a few pockets of use--at least in the United States--but if you look at it a bit, you start to wonder why any health care institution uses any proprietary software at all.

What the evidence suggests

Take the conference session by University of Chicago researchers commissioned to produce a report for Congress on open source in health care. They found several open source packages that met the needs for electronic records at rural providers with few resources, such as safety-net providers.

They found that providers who adopted open source started to make the changes that the adoption of electronic health records (or any major new system) is supposed to do, but rarely does in proprietary health settings.

  • They offer the kinds of extra attention to patients that improve their health, such as asking them questions about long-term health issues.

  • They coordinate care better between departments.

  • They have improved their workflows, saving a lot of money

And incidentally, deployment of an open source EHR took an estimated 40% of the cost of deploying a proprietary one.

Not many clinics of the type examined--those in rural, low-income areas--have the time and money to install electronic records, and far fewer use open source ones. But the half-dozen examined by the Chicago team were clear success stories. They covered a variety of areas and populations, and three used WorldVistA while three used other EHRs.

Their recommendations are:

  • Greater coordination between open source EHR developers and communities, to explain what open source is and how they benefit providers.

  • Forming a Community of Practice on health centers using open source EHRs.

  • Greater involvement from the Federal Government, not to sponsor open source, but to make communities aware that it's an option.

Why do so few providers adopt open source EHRs? The team attributed the problem partly to prejudice against open source. But I picked up another, deeper concern from their talk. They said success in implementing open source EHRs depends on a "strong, visionary leadership team." As much as we admire health providers, teams like that are hard to form and consequently hard to find. But of course, any significant improvement in work processes would require such a team. What the study demonstrated is that it happens more in the environment of an open source product.

There are some caveats to keep in mind when considering these findings--some limitations to the study. First, the researchers had very little data about the costs of implementing proprietary health care systems, because the vendors won't allow customers to discuss it, and just two studies have been published. Second, the sample of open source projects was small, although the consistency of positive results was impressive. And the researchers started out sympathetic to open source. Despite the endorsement of open source represented by their findings, they recognized that it's harder to find open source and that all the beneficial customizations take time and money. During a Birds-of-a-Feather session later in the conference, many of us agreed that proprietary solutions are here for quite some time, and can benefit by incorporating open source components.

The study nevertheless remains important and deserves to be released to Congress and the public by the Department of Health and Human Services. There's no point to keeping it under wraps; the researchers are proceeding with phase 2 of the study with independent funding and are sure to release it.

So who uses open source?

It's nice to hear about open source projects (and we had presentations on several at last year's OSCon health care track) but the question on the ground is what it's like to actually put one in place. The implementation story we heard this year was from a team involving Roberts-Hoffman Software and Tolven.

Roberts-Hoffman is an OSCon success story. Last year they received a contract from a small health care provider to complete a huge EHR project in a crazily short amount of time, including such big-ticket requirements as meeting HIPAA requirements. Roberts-Hoffman knew little about open source, but surmised that the customization it permitted would let them achieve their goal. Roberts-Hoffman CEO Vickie Hoffman therefore attended OSCon 2010, where she met a number of participants in the health care track (including me) and settled on Tolven as their provider.

The customer put some bumps in the road to to the open source approach. For instance, they asked with some anxiety whether an open source product would expose their data. Hoffman had a little educating to do.

Another hurdle was finding a vendor to take medication orders. Luckily, Lexicomp was willing to work with a small provider and showed a desire to have an open source solution for providers. Roberts-Hoffman ended up developing a Tolven module using Lexicomp's API and contributing it back to Tolven. This proprietary/open source merger was generally quite successful, although it was extra work providing tests that someone could run without a Lexicomp license.

In addition to meeting what originally seemed an impossible schedule, Tolven allowed an unusual degree of customization through templating, and ensured the system would work with standard medical vocabularies.

Why can't you deliver my data?

After presentations on health information exchanges at OSCON, I started to ruminate about data delivery. My wife and I had some problems with appliances this past Spring and indulged in some purchases of common household items, a gas grill from one company and a washing machine from another. Each offered free delivery. So if low-margin department stores can deliver 100-pound appliances, why can't my doctor deliver my data to a specialist I'm referred to?

The CONNECT Gateway and Direct project hopefully solve that problem. CONNECT is the older solution, with Direct offering an easier-to-implement system that small health care providers will appreciate. Both have the goal of allowing health care providers to exchange patient data with each other, and with other necessary organizations such as public health agencies, in a secure manner.

David Riley, who directed the conversion of CONNECT to an open-source, community-driven project at the Office of the National Coordinator in the Department of Health and Human Services, kicked off OSCon's health care track by describing the latest developments. He had led off last year's health care track with a perspective on CONNECT delivered from his role in government, and he moved smoothly this time into covering the events of the past year as a private developer.

The open-source and community aspects certainly proved their value when a controversy and lawsuit over government contracts threatened to stop development on CONNECT. Although that's all been resolved now, Riley decided in the Spring to leave government and set up an independent non-profit foundation, Alembic, to guide CONNECT. The original developers moved over to Alembic, notably Brian Behlendorf, and a number of new companies and contributors came along. Most of the vendors who had started out on the ONC project stayed with the ONC, and were advised by Riley to do so until Alembic's course was firm.

Lots of foundations handle open source projects (Apache, etc.) but Riley and Behlendorf decided none of them were proper for a government-centric health care project. CONNECT demanded a unique blend of sensitivity to the health care field and experience dealing with government agencies, who have special contract rules and have trouble dealing with communities. For instance, government agencies are tasked by Congress with developing particular solutions in a particular time frame, and cannot cite as an excuse that some developer had to take time off to get a full-time job elsewhere.

Riley knows how to handle the myriad pressures of these projects, and has brought that expertise to Alembic. CONNECT software has been released and further developed under a BSD license as the Aurion project. Now that the ONC is back on track and is making changes of its own, the two projects are trying to heal the fork and are following each other's changes closely. Because Aurion has to handle sensitive personal data deftly, Riley hopes to generalize some of the software and create other projects for handling personal data.

Two Microsoft staff came to OSCon to describe Direct and the open-source .NET libraries implementing it. It turned out that many in the audience were uninformed about Direct (despite an intense outreach effort by the ONC) and showed a good deal of confusion about it. So speakers Vaibhav Bhandari and Ali Emami spent the whole time alloted (and more) explaining Direct, with time for just a couple slides pointing out what the .NET libraries can do.

Part of the problem is that security is broken down into several different functions in ONC's solution. Direct does not help you decide whether to trust the person you're sending data to (you need to establish a trust relationship through a third party that grants certificates) or find out where to send it (you need to know the correspondent's email address or another connection point). But two providers or other health care entities who make an agreement to share data can use Direct to do so over email or other upcoming interfaces.

There was a lot of cynicism among attendees and speakers about whether government efforts, even with excellent protocols and libraries, can get doctors to offer patients and other doctors the necessary access to data. I think the reason I can get a big-box store to deliver an appliance but I can't get my doctor to deliver data is that the big-box store is part of a market, and therefore wants to please the customer. Despite all our talk of free markets in this country, health care is not a market. Instead, it's a grossly subsidized system where no one has choice. And it's not just the patients who suffer. Control is removed from the providers and payers as well.

The problem will be solved when patients start acting like customers and making appropriate demands. If you could say, "I'm not filling out those patient history forms one more time--you just get the information where I'm going," it might have an effect. More practically speaking, let's provide simple tools that let patients store their history on USB keys or some similar medium, so we can walk into a doctor's office and say "Here, load this up and you'll have everything you need."

What about you, now?

Patient control goes beyond data. It's really core to solving our crisis in health care and costs. A lot of sessions at OSCon covered things patients could do to take control of their health and their data, but most of them were assigned to the citizen health track (I mentioned them at the end of my preview article a week ago) and I couldn't attend them because they were concurrent with the health care track.

Eri Gentry delivered an inspiring keynote about her work in the biology start-up BioCurious, Karen Sandler (who had spoken in last year's health care track scared us all with the importance of putting open source software in medical devices, and Fred Trotter gave a brief but riveting summary of the problems in health care. Fred also led a session on the Quantified Self, which was largely a discussion with the audience about ways we could encourage better behavior in ourselves and the public at large.

Guaranteed to cause meaningful change

I've already touched on the importance of changing how most health care institutions treat patients, and how open source can help. David Uhlman (who has written a book for O'Reilly with Fred Trotter) covered the complex topic of meaningful use, a phrase that appeared in the recovery act of 2009 and that drives just about all the change in current U.S. institutions. The term "meaningful use" implies that providers do more than install electronic systems; they use them in ways that benefit the patients, the institutions themselves, and the government agencies that depend on their data and treatments.

But Uhlman pointed out that doctors and health administrators--let alone the vendors of EHRs--focus on the incentive money and seem eager to do the minimum that gets them a payout. This is self-defeating, because as the government will raise the requirements for meaningful use over the years, and will overwhelm quick-and-dirty implementations that fail to solve real problems. Of course, the health providers keep pushing back the more stringent requirements to later years, but they'll have to face the music someday. Perhaps the delay will be good for everyone in the long run, because it will give open source products a chance to demonstrate their value and make inroads where they are desperately needed.

As a crude incentive to install electronic records, meaningful use has been a big success. Before the recover act was passed, 15%-20% of U.S. providers had EHRs. Now the figures is 60% or 70% percent, and by the end of 2012 it will probably be 90%. But it remains to be seen whether doctors use these systems to make better clinical decisions, follow up with patients so they comply with treatments, and eliminate waste.

Uhlman said that technology accounts for about 20% of the solution. The rest is workflow. For instance, every provider should talk to patients on every visit about central health concerns, such as hypertension and smoking. Research has suggested that this will add 30% more time per visit. If it reduces illness and hospital admissions, of course, we'll all end up paying less in taxes and insurance. His slogan: meaningful use is a payout for quality data.

It may be surprising--especially to an OSCon audience--that one of the biggest hurdles to achieving meaningful use is basic computer skills. We're talking here about typing information in correctly, knowing that you need to scroll down to look at all information on the screen, and such like. All the institutions Uhlman visits think they're in fine shape and everybody has the basic skills, but every examination he's done proves that 20%-30% of the staff are novices in computer use. And of course, facilities are loath to spend extra money to develop these skills.

Open source everywhere

Open source has image and marketing problems in the health care field, but solutions are emerging all over the place. Three open source systems right now are certified for meaningful use: ClearHealth (Uhlman's own product), CareVue from MedSphere, and WorldVistA. OpenEMR is likely to join them soon, having completed the testing phase. vxVistA is certified but may depend on some proprietary pieces (the status was unclear during the discussion).

Two other intriguing projects presented at OSCon this year were popHealth and Indivo X. I interviewed architects from Indivo X and popHealth before they came to speak at OSCon. I'll just say here that popHealth has two valuable functions. It helps providers improve quality by providing a simple web interface that makes it easy for them to view and compare their quality measures (for instance, whether they offered appropriate treatment for overweight patients). Additionally, popHealth saves a huge amount of tedious manual effort by letting them automatically generate reports about these measures for government agencies. Indivo fills the highly valued space of personal health records. It is highly modular, permitting new data sources and apps to be added; in fact, speaker Daniel Haas wants it to be an "app store" for medical applications. Both projects use modern languages, frameworks, and databases, facilitating adoption and use.

Other health care track sessions

An excellent and stimulating track was rounded out with several other talks.

Shahid Shah delivered a talk on connecting medical devices to electronic record systems. He adroitly showed how the data collected from these devices is the most timely and accurate data we can get (better than direct reports from patients or doctors, and faster than labs), but we currently let it slip away from us. He also went over standard pieces of the open source stacks that facilitate the connection of devices, talked a bit about regulations, and discussed the role of routine engineering practices such as risk assessments and simulations.

Continuing on the quality theme, David Richards mentioned some lessons he learned designing a ways clinical decision support system. It's a demanding discipline. Accuracy is critical, but results must be available quickly so the doctor can use them to make decisions during the patient visit. Furthermore, the suggestions returned must be clear and precise.

Charlie Quinn talked about the collection of genetic information to achieve earlier diagnoses of serious conditions. I could not attend his talk because I was needed at another last-minute meeting, but I sat down for a while with him later.

The motto at his Benaroya Research Institute is to have diagnosis be more science, less art. With three drops of blood, they can do a range of tests on patients suspected of having particular health conditions. Genomic information in the blood can tell a lot about health, because blood contains viruses and other genomic material besides the patient's own genes.

Tests can compare the patients to each other and to a healthy population, narrowing down comparisons by age, race, and other demographics. As an example, the institute took samples before a vaccine was administered, and then at several frequent intervals in the month afterward. They could tell when the vaccine had the most powerful effect on the body.

The open source connection here is the institute's desire to share data among multiple institutions so that more patients can be compared and more correlations can be made. Quinn said it's hard to get institutions to open up their data.

All in all, I was energized by the health care track this year, and really impressed with the knowledge and commitment of the people I met. Audience questions were well-informed and contributed a lot to the presentations. OSCon shows that open source health care, although it hasn't broken into the mainstream yet, already inspires a passionate and highly competent community.

May 01 2010

Report from Health Information Technology in Massachusetts

When politicians organize a conference, there's obviously an agenda--beyond the published program--but I suspect that it differed from the impressions left by speakers and break-out session attendees at Health Information Technology: Creating Jobs, Reducing Costs, & Improving Quality.

A quick overview of what I took away from the conference is sobering.
Health care costs will remain high for many years while
institutionalize measures intended to reduce them. Patients will still
have trouble getting their records in electronic form to a different
doctor (much less access it themselves). And quality control will make
slow headway against the reluctance of doctors to share data on
treatment outcomes.

Still, I have to give the optimists their due, and chief among the
optimists is Richard Shoup, director of the href="http://maehi.org/">Massachusetts eHealth Institute and one
of the conference's key organizers. He points out that the quality
control measures emerging at the federal level (the "meaningful use"
criteria for electronic health records) meshes excellently with both
the principles and the timing legislated in href="http://www.mass.gov/legis/laws/seslaw08/sl080305.htm">Section
305 in the Massachusetts health care bill. Massachusetts has a
long history of health care IT deployment and of collaboration to
improve quality. "All stakeholders are at the table," he says, and the
Massachusetts eHealth Institute recently floated a href="http://www.maehi.org/HIT/plan.html">statewide plan for
implementing health care IT.

A conference fraught with political meaning

Gov 2.0 Expo 2010There was no doubt that politicians high up in the federal and Massachusetts governments respected the significance of this conference, which was also called the Governors National Conference (no missing apostrophe here; the conference really did draw representatives from many governors). Attendees included Massachusetts governor Deval Patrick (who came straight from the airport to speak), Senate president Therese Murray, US Surgeon General Regina Benjamin, and health care national coordinator David Blumenthal. I haven't even mentioned the many other scheduled speakers who could not attend for one reason or another.

As Governor Patrick indicated, Massachusetts is an excellent locale
for this conference. Besides the high concentration of medical
institutions that attract patients from around the world, and a decent
number of innovative research facilities, we are leaders in electronic
physician order entry and other aspects of health care IT.

I wondered, though, why no venue for this conference could be found in
the Longwood medical area. It would require handling the crowds
differently, but perhaps the main drawback is that Longwood would
swamp the out-of-towners in attendees from local institutions. But
instead, we were located in the new conference center area of Boston,
a place devoid of signs of life even though it's only a fifteen-minute
walk from the bustling financial district.

The conference met the needs of both the state and federal
administrations. Patrick hit on three major topics on many people's
minds: adding jobs, lowering health care premiums for small
businesses, and reducing the burden of health care in local
governments.

The pressures at the state level are out in full view. A recent flap
frightened the health care industry when insurers proposed annual
insurance policy increases of up to 22% and the administration slapped
them down. Although an annual 22% raise is clearly unsustainable,
imposing arbitrary limits (known as capitation) usually leads to
equally arbitrary denials of care instead of the creative fine-tuning
required to intelligently eliminate waste. I noted today that Paul
Tang, who is responsible for defining meaningful use for the federal
stimulus bill, says that to improve quality, the health care system
has to move from fee-for-service to paying for outcomes, but that we
don't yet know how to do make such a major change.

As mentioned earlier, the Massachusetts health care bill as well as
the federal recovery and health care bills include ways to collect
data, analyze it, and disseminate results meant to raise quality while
lowering costs. I have to say that I'll believe it when I see it,
because "doing the right thing" (as David Blumenthal called the
implementation of electronic health records) has to fight barriers put
up consciously or unconsciously by medical institutions, individual
doctors, and electronic health record vendors.

Nationally, both the stimulus package and the health care bill
stipulate very ambitious goals and extremely accelerated
schedules--and still, many people worry that the incentives aren't
strong enough to make them come to pass.

David Blumenthal lays out the stimulus package

The Department of Health and Human Services, to administer the
billions of dollars provided in the stimulus package and the demands
on health care providers that may dwarf that appropriation, set up the
Office of the National Coordinator with the task of making and
administering regulations. David Blumenthal came from Boston back to
Washington to take on the job of National Coordinator, and
practitioners in health care now hang on his every word.

Under such circumstances, one has to look beyond the official aspects
of Blumenthal's keynote and look at particular inflections or
emphases. Most telling to me was his metaphor of putting heath care
providers on an escalator. The point was that no matter what problems
they encounter, they should keep moving. It's OK to start slow (he
spoke of making the first step low enough) as long as the institution
keeps adding functions along the sequence specified in the ONC
documents.

Given the extensive goals in using electronic records, sharing data
with relevant agencies, and improving clinical care, Blumenthal made
some statements one could see as defending the initiatives. He pointed
out that when the goals were circulated for public comment, many
people questioned the ambitiousness or timing, but hardly anybody
challenged the direction they were taking or the value of the goals.

He did admit some of the barriers we are collectively facing:

  • The unmatched diversity this country presents in geography,
    demographics, income and educational levels, political philosophies,
    etc.

  • The risk of holding back innovation. As standards are specified in
    more detail, they increase the chance that conforming implementations
    will interoperate, but also the chance that future advances in a field
    will be hard to reflect in product improvements. (John Halamka, CIO of
    Harvard Medical School and an advisor to the federal government on
    implementing health care policy, issued a similar warning on his panel
    the next day.)

  • Resilient problems with privacy. It's worth mentioning, in this
    regard, a study cited by a lawyer on a a later panel, David Szabo.
    Fears of privacy hold back many people from using personal health
    records, and are cited even by a large percentage of people who use
    them. Only 4% of respondents trusted HIPAA to protect them. But many
    say they would start using personal health records if privacy laws
    were improved.

The high-level priorities cited by Blumenthal were to help small and
rural providers who have few resources (the task of Regional Extension
Centers, a new institution in health care created by the stimulus
bill) to get data in the hands of patients, and to "make electronic
systems so easy to use that doctors can't wait to turn them on in the
morning." I'll return to this sunny notion later.

Patient-centered care

As I claimed in an href="http://radar.oreilly.com/2010/03/report-from-himms-health-it-co-1.html">
earlier blog, the revolution that will really crack open the
electronic health record field is the need to share data with and
among patients. The same point was raised today by Paul Tang.

One of the barriers to giving data to patients is that, frankly, it's
not in a form they can use. Current records are fashioned more toward
insurance claims than clinical needs. They can be confusing and
positively frightening to someone who doesn't understand the peculiar
circumstances that drive the entries. Doctors are consequently
reluctant to open current records to patients. Barbra Rabson also said
that this dominance of billing data makes it hard to collect useful
data for quality control, but that it will be several years before
doctors provide the clinical data that will provide a better basis for
analysis.

Themes that came up throughout the conference suggested that
improvements in health require patient education. Some speakers
objected to using the term "patient" because that already implies
ill-health and sets up a situation where the professional health
provider is in control.

John Halamka said that the recently passed federal health care bill
requires health care systems to make it possible for all patients to
get electronic access to their data.

How can we get patients to use this power? They need to understand,
first of all, the benefits of having access to their data. John Moore,
who promotes patient-centered care at href="http://chilmarkresearch.com">Chilmark Research, said that
for many people this will begin at the office, because some companies
require employees to take some responsibility for managing their own
insurance. Patient records may become more widely used as patients
find value in them far beyond tracking their treatment: to order
refills of medicine, make follow-up appointments, and so on.

Next, patients have to learn the value of adding to that data, and how
to do so. (Another problem with patient-centered care is that some
patients deliberately or mistakenly enter incorrect information or
fail to record important events.) As US Surgeon General Regina
Benjamin pointed out in a teleconferenced talk, we have to design a
patient-centered system that can be used even by illiterate patients,
who are quite common in our country and who need perhaps even more
assistance than the people who can read this blog.

With all these practices in place, patients can turn to comprehending
the information they get back and using it to improve the quality of
their lives. One doctor even pushed to pay patients for complying with
treatment plans, to put some responsibility for outcomes on the
patient.

Girish Kumar Navani, CEO of the eClinicalWorks health record vendor,
mentioned that involving patients in their care provides a powerful
motivation to expand access to high-bandwidth Internet.

Privacy came up in this talk, as it did in nearly every one. David
Szabo reassured us that there are more legal protections in place than
we tend to admit. Many patient record sites post privacy policies. The
FTC, and many state attorneys general, vigorously these policies. What
Szabo did not address--because, I suppose, it fell outside legal
considerations--was the risk of data breaches, which should concern us
because attacks on health care repositories are on the rise.

Data exchange

One pediatrician recounted a teeth-clenching story of a doctor who
moved his practice to another hospital and instantly lost electronic
access to all his records. Any patient who wants to stay with him will
have to obtain records in printed form and have them re-entered at the
new hospital. This frustrating scenario gets repeated at every level
of the national health system as systems trap data in proprietary
formats.

Several members of the ONC have boasted how their specifications for
electronic records and health information exchanges say nothing about
architecture, being "technology neutral." One can interpret this as
modest caution, but could we also see in it a veiled plea for help, an
acknowledgment that current standards and protocols aren't up to the
task?

While many people criticize the vendors of electronic health systems
for incompatibility, Micky Tripathi, president of the Massachusetts
eHealth Collaborative, said that doctors are more to blame. The
doctors have assigned no importance to sharing data with other doctors
or with responsible agencies, and just demand electronic systems that
allow them to continue with their old workflows and require the least
possible change in behavior. One doctor in a break-out session
reported that doctors use the systems inconsistently or enter data in
unstructured comments instead of fields designated for that data, so
that automatic searching and aggregation of data becomes impossible.


Tripathi pointed out that standards in themselves don't get people to
communicate. The history in every field is that people start to feel a
burning need to communicate; systems and standards then emerge from
that. The very early days of telephony resembled today's health
information exchanges: you needed a separate phone and a
point-to-point line for each person you wanted to talk to. Even in
1901, the United States had 2,811 independent phone networks.
(Tripathi didn't point out that it took heavy-handed government
mandates to bring that number down to one, and that this AT&T
network eventually became a bottleneck--if not a chokepoint--for
innovation.) His main point remains valid: most systems start out
cumbersome and expensive before best practices and standards help them
converge on elegant solutions.

Along those lines, a commenter in one forum praised the New England
hospital network, NEHEN, and claimed that it started before
applications were available, but generated innovative applications.
J. Marc Overhage, a leader in the use of electronic records for
clinical decision support, added a cute reference to McDonald's, which
waits for a highway to be built before putting a restaurant at the
interchange.

Daniel Nigrin, CIO of Children's Hospital, also praised NEHEN but
reminded us it was designed only for doctors, not patients.

I talked to managers at Coping
Systems
, a firm that helps hospitals assess their quality of care
by analyzing statistics and presenting them in visual displays. The
biggest barrier Coping Systems face is the willingness of hospitals to
share data. Patient data must be anonymized, of course, but sometimes
hospitals won't share data about quality of care unless the name of
the institution is removed. Even by looking at their own data in
isolation, though, a hospital or an individual doctor can discover
insights that change treatment. They can check the expected versus
actual outcomes for individual doctors, for a doctor working with a
particular nurse, for a particular time of the day, etc.

Tang mentioned a simple example of how public health could be improved
by data collection. During last year's rush to provide H1N1 flu
vaccines to the most critical people, the government divided the
limited supplies up geographically. Some areas with high
concentrations of vulnerable people were severely constrained, and if
we had data about the locations of people who needed the vaccine, we
could have distributed it on a much fairer basis.

John Halamka, while acknowledging that many current standards for
electronic records are adequate for the task, called for better
standards to classify patients and treatments. Right now, for
instance, it's hard to define who is diabetic, which makes it hard to
compare statistics about the treatment of diabetics by different
doctors. A recent ONC meeting, covered in href="http://radar.oreilly.com/2010/04/hit-standards-committee-addres.html">another
Radar post, discussed standards for health IT.

Halamka said that electronic records, for which he is a strong
advocate, will catch on when doctors realize they facilitate new
activities that the doctors could never do before. In this way Halamka
fleshed out and energized Blumenthal's dream of "electronic systems so
easy to use that doctors can't wait to turn them on in the morning."
Whether this involves improvements to public health or something more
closely aligned to doctors' day-to-day practices, good planning will
help doctors, patients, and researchers all move toward a brighter
health care future.

Related:

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.

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