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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

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.

February 06 2012

Small Massachusetts HIT conference returns to big issues in health care

I've come to look forward to the Massachusetts Heath Data Consortium's annual HIT conference because--although speakers tout the very real and impressive progress made by Massachusetts health providers--you can also hear acerbic and ruthlessly candid critiques of policy and the status quo. Two notable take-aways from last year's conference (which I wrote up at the time) were the equivalence of old "managed care" to new "accountable care organizations" and the complaint that electronic health records were "too expensive, too hard to use, and too disruptive to workflow." I'll return to these claims later.

The sticking point: health information exchange

This year, the spears were lobbed by Ashish Jha of Harvard Medical School, who laid out a broad overview of progress since the release of meaningful use criteria and then accused health care providers of undermining one of its main goals, the exchange of data between different providers who care for the same patient. Through quantitative research (publication in progress), Jha's researchers showed a correlation between fear of competition and low adoption of HIEs. Hospitals with a larger, more secure position in their markets, or in more concentrated markets, were more likely to join an HIE.

The research bolsters Jha's claim that the commonly cited barriers to using HIEs (technical challenges, cost, and privacy concerns) are surmountable, and that the real problem is a refusal to join because a provider fears that patients would migrate to other providers. It seems to me that the government and public can demand better from providers, but simply cracking the whip may be ineffective. Nor should it be necessary. An urgent shortage of medical care exists everywhere in the country, except perhaps a few posh neighborhoods. There's plenty for all providers. Once insurance is provided to all the people in need, no institution should need to fear a lack of business, unless it's performance record is dismal.

Jha also put up some research showing a strong trend toward adopting electronic health records, although the small offices that give half the treatment in the United States are still left behind. He warned that to see big benefits, we need to bring in health care institutions that are currently given little attention by the government--nursing home, rehab facilities, and so forth--and give them incentives to digitize. He wrapped up by quoting David Blumenthal, former head of the ONC, on the subject of HIEs. Blumenthal predicted that we'd see EHRs in most providers over the next few years, and that the real battle would be getting them to adopt health information exchange.

Meanwhile, meaningful use could trigger a shake-out in the EHR industry, as vendors who have spent years building silo'd projects fail to meet the Stage 2 requirements that fulfill the highest aspirations of the HITECH act that defined meaningful use, including health information exchange. Meanwhile, a small but steadily increasing number of open source projects have achieved meaningful use certification. So we'll see more advances in the adoption of both EHRs and HIEs.

Low-hanging fruit signals a new path for cost savings

The big achievement in Massachusetts, going into the conference today, was a recent agreement between the state's major insurer, Blue Cross Blue Shield, and the 800-pound gorilla of the state's health care market, Partners HealthCare System. The pact significantly slows the skyrocketing costs that we've all become accustomed to in the United States, through the adoption of global payments (that is, fixed reimbursements for treating patients in certain categories). That two institutions of such weight can relinquish the old, imprisoning system of fee-for-service is news indeed.

Note that the Blue Cross/Partners agreement doesn't even involve the formation of an Accountable Care Organization. Presumably, Partners believes it can pick some low-hanging fruit through modest advances in efficiency. Cost savings you can really count will come from ACOs, where total care of the patient is streamlined through better transfers of care and intensive communication. Patient-centered medical homes can do even more. So an ACO is actually much smarter than old managed care. But it depends on collecting good data and using it right.

The current deal is an important affirmation of the path Massachusetts took long before the rest of the country in aiming for universal health coverage. We all knew at the time that the Massachusetts bill was not addressing costs and that these would have to be tackled eventually. And at first, of course, health premiums went up because a huge number of new people were added to the roles, and many of them were either sick or part of high-risk populations.

The cost problem is now being addressed through administrative pressure (at one point, Governor Deval Patrick flatly denied a large increase requested by insurers), proposed laws, and sincere efforts at the private level such as the Blue Cross/Partners deal. I asked a member of the Patrick administration whether they problem could be solved without a new law, and he expressed the opinion that there's a good chance it could be. Steven Fox of Blue Cross Blue Shield said that 70% of their HMO members go to physicians in their Alternative Quality Network, which features global payments. And he said these members have better outcomes at lower costs.

ACOs have a paradoxical effect on health information exchange Jha predicted that ACOs, while greatly streamlining the exchanges between their member organizations, because these save money, they will resist exchanging data with outside providers because keeping patients is even more important for ACOs than for traditional hospitals and clinics. Only by keeping a patient can the ACO reap the benefits of the investments they make in long-term patient health.

As Doris Mitchell received an award for her work with the MHDC, executive directory Ray Campbell mentioned the rapid growth and new responsibilities of her agency, the Group Insurance Commission, which negotiates all health insurance coverage for state employees, as cities and towns have been transferring their municipal employees to it. A highly contentious bill last year that allowed the municipalities to transfer their workers to the GIC was widely interpreted as a blow against unionized workers, when it was actually just a ploy to save money through the familiar gambit of combining the insured into a larger pool. I covered this controversy at the time.

A low-key conference

Attendance was down at this year's conference, with about half the attendees and vendors as last year's. Lowered interest seemed to be reflected as none of the three CEOs receiving awards turned up to represent their institutions (the two institutions mentioned earlier for their historic cost-cutting deal--Blue Cross Blue Shield and Partners HealthCare--along with Steward Health Care).

The morning started with a thoughtful look at the requirements for ACOs by Frank Ingari of Essence Healthcare, who predicted a big rise in investment by health care institutions in their IT departments. Later speakers echoed this theme, saying that hospitals should invest less in state-of-the-art equipment that leads to immediately billable activities, and more in the underlying IT that will allow them to collect research data and cut down waste. Some of the benefits available through this research were covered in a talk at the Open Source convention a couple years ago.

Another intriguing session covered technologies available today that could be more widely adopted to improve health care. Videos of robots always draw an enthusiastic response, but a more significant innovation ultimately may be a database McKesson is developing that lets doctors evaluate genetic tests and decide when such tests are worth the money and trouble.

The dozen vendors were joined by a non-profit, Sustainable Healthcare for Haiti. Their first project is one of the most basic health interventions one can make: providing wells for drinkable water. They have a local sponsor who can manage their relationship with the government, and an ambitious mission that includes job development, an outpatient clinic, and an acute care children's hospital.

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