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 we 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 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 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 statewide plan for implementing health care IT.

A conference fraught with political meaning

There 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 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 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 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:

• Health IT committee has six months to define insurance enrollment standards