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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.

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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