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

Data as a platform, patient control, and partnerships are key

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 guidelines

Now that the government is forcing doctors to release information 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.

Strata Rx — Strata Rx, being held Oct. 16-17 in San Francisco, is the first conference to bring data science to the urgent issues confronting healthcare.

Save 20% on registration with the code RADAR20

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  • Nathan DiNiro

    Andy, I am thrilled with the fact that your writing on healthcare reflects your pursuit of a continual learning process, and that it is likely reaping benefits for anyone who takes the time to follow your quest. There’s next to nothing that you have said that I don’t agree with, and as a Program Manager for 4 prospective Accountable Care Organizations, the entities of which you speak that are using medicare and publicly funded programs as a lever for change, I can say that you are spot on about the fact that we essentially can’t fix the system without redesigning the relationships, culture, business model and approach that all sides of the equation have a stake in. Hat’s off to your continued work following this emergent phenomenon of restructuring the system to improve health, lower cost and improve the overall experience in healthcare!

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  • http://twitter.com/rboates Randall Oates, MD

    Where is the leadership going to come from? Why do we tolerate:
    1. Clinicians in larger groups currently acquiring largely siloed EHRs and/or processes that have often lowered their capacity to actually see patients. This on the verge of needing to bring 32,000,000 more patients into a system of declining payment per patient visit.
    2. Clinicians in smaller practices currently gravitating to siloed EHR products often lacking a sustainable business model beyond a limited venture capital supply.
    3. Public HIEs without sustainable business models beyond their government funding.

    In 2014, are we not going to have millions of angry patients with insurance cards with no place to go and little to no access to their health records?

  • Crzynuf2bhere

    Away from the industry for awhile from the health claims standpoint, what has been the effects and implementations of things like the DRG program put into play during the ‘sunset laws’?
    on section:
    1. How many providers are frightened by the loss of heart and humanity in these records? Is it feasbible to have like old fashioned written records via use of stylus on tablet and legibility and records transcribed by office staff?
    2. Where is the interface as well with compatibility of the ‘family file’ and interactive drug reactions on members to help maintain or minimize deleterious effects on the family? i.e. different family members seeing different doctors but the contraindicatory effects of each adversely affect the family unit. Also, these are health care providers, not babysitters, not the be all end all of data collection in the name of science and stats…..patients are people, not data elements only for your study, accept their humanity and allow them to live, not help you clinicize the world.
    3. If you let patients be in charge of their records, will there not be innumerable problems in the maintenance of those records, the questions, the addendums, and corrections..losing once again all hope of cost effectiveness and containment.
    Good record keeping is a must to be learned during residency. Strict taskmasters in consistency, form, and style should be applauded. After the fact, is too late! (and too difficult to track and remember-the doctor with clean accurate records cover his/her buns from a variety of ills later-histories=CYA)

  • Crzynuf2bhere

    The art of healing, The art of knowing the healing needed from that professional. All the records and technological worries/concerns show too much of a focussed obsession/compulsion antithetical to the true patient and the true ‘healer’ for the Hippocratic view of the dignity and preservation of that dignity of the human life….