The Future of Your Medical Data

How health data is becoming better connected, a la Facebook, changing the way patients, doctors and institutions interact















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Other doctors, however, are concerned that some patients' desire to participate will bog down the physician's ability to pursue diagnostic and treatment hypotheses based on the latter's formal training and experience, Kashyap notes.

Downloading care
If fewer office consultations are scheduled and more information is shared with patients digitally, many researchers worry that patients will have trouble properly digesting that data. Although it might be efficient to have lab test results available for patient downloading as soon as they're available, "there has to be a way to provide meaningful interpretation" along with the data, Gomez says.

DeBronkart has already had the experience of reading—and misreading—his test results online. "I misinterpreted a CAT-scan report because I didn't know the vocabulary," he says. But that incident did not leave him wishing he had not downloaded the findings himself. "The answer is to inform, educate and empower" patients, rather than keeping them in the dark, says deBronkart, who writes a blog called The New Life of e-Patient Dave (e-patient is short for "engaged patient").

With experience comes learning, he points out. And as people gain more experience with their medical and health information, they will become more adept at understanding and using it, he notes.

From her research, Wake Forest's Johnson has found that patients would welcome rapid online access to new test results. "It's a growing movement among people," she says. "It's an information age, and health care has been left out of it for awhile." But the information should come with explanation—perhaps in the form of links to vetted informational Web sites, she notes.

In addition to context, Johnson says, "timing is crucial. We don't want to do anything that will cause patients to be more anxious." Although patient focus groups have noted waiting for test results as one of the most anxiety-provoking times, Johnson worries that it might be better than seeing a result "and you don't know what it means, and no one is available to discuss it."

Cultivating customers
When people do have to make a trip to the hospital or doctor's office, their digital data will help to prepare not only the patient, but also the care providers and institutions. As Gomez notes, many patients become frustrated by having to repeat key information to each new health professional that they meet. If such information were digitized and distributed among the relevant doctors, nurses and administrators, interactions with patients could be more geared toward furthering conversations about care rather than just catching up on background information.

Many researchers in the field of medical information technology note that digitizing patient data—and patients' increasing access to it—will likely shift hospital business models to be more like those for other service industries. "Patients will become clients or customers," Gomez says. As people can take their data and seek consultations or advice from institutions across the country or the globe, hospitals themselves will need to up their competitive strategies to obtain and retain patients. And much of that, Gomez says, will be in becoming more "information oriented," so that, for example, dozens of health professionals that may attend to a patient do not need to keep asking the same questions.

Gomez projects that many of these sweeping changes in patient access to health and medical information will unfold in the next three to five years. Technological developments, however, could even shorten that window.

Personal health data as an individually managed aspect of daily life, however, has not yet reached the popularity of other killer apps for personal and lifestyle services, such as mobile banking, stock trading or social networking. Yale's Kashyap points out that fewer than 10 percent of people who currently have a patient-controlled personal health record use it on a monthly basis, and that as a physician who provides these records with direct-messaging capabilities, she does not get that many messages from her patients. Kashyap's estimates for adoption are a little more conservative. After working with personal health records for several years, she predicts about a decade's time before many of these personal health record programs will fully take hold. But in the future, she says, personal health data will likely be integrated with genomic information to provide finely tuned individualized care. And the new wealth of digital data will be a boon to medical researchers who will be able to get a fuller picture of diseases and conditions over time and populations.



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  1. 1. reality_check1 07:07 PM 4/12/10

    Harmon mentions that some doctors will feel threatened and concerned about missing a side effect, etc., but a related issue is the doctor's own confidence in his/her ability to accurately diagnose a medical problem. And with hiding misdiagnoses.

    The trend towards the more informed "consumer" is already causing stress among some some clinicians. I experienced this after separating my shoulder. I'm a Type-A information gatherer and engineer, and with a little research, I found I needed a specific type of X-ray for accurate diagnosis. When I arrived at the radiologist, the wrong type (I was pretty darn sure) had been specified. I mentioned this to the original doctor on my followup and she admitted the mistake. However, I didn't realize until that point that the correct X-ray would have changed the treatment and improved my outcome. Now I have a minor but annoying shoulder disability. But hey, I understand mistakes happen. What I *could not* tolerate was her final statement when I challenged her diagnosis. She told me, "We don't like our patients to use the Internet."

    I'm not implying that patients are smarter than doctors, but I am asserting that patients have a much higher vested interest in their own health. And many of us are well educated and capable of basic research, and capable of separating the Internet wheat from the chaff.

    I think Electronic Health Records will create a whole new behavior on the part of clinicians - one that veers away from recording purely medical information towards forward-looking damage control from potential lawsuits, etc.

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  2. 2. JEngdahlJ 11:31 AM 4/13/10

    Federal funding may be encouraging a move toward EHR, but there's more to it than just installing systems. How can healthcare data pooling lead to a better system? More at http://www.healthcaretownhall.com/?p=2193

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  3. 3. HITinfo 12:47 PM 4/13/10

    The push for electronic health records is certainly supported by federal government, and in fact, medical providers will even be penalized with lower Medicare/Medicaid reimbursements if they do not adopt an electronic health records system by 2016. This push is not met without resistance, and I think what it comes down to is educating providers and patients about this inevitable shift towards an integrated health information system in medicine so they are informed and prepared for this change. Here are some great resources for information on the Health IT industry:
    http://www.ehrtv.com/
    http://www.ehrscope.com/blog/ and http://www.emrconsultant.com/

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  4. 4. andreanis 12:23 PM 4/14/10

    ye That's quite true if on the one hand digitalisation allows
    a better healthcare because of more modern technology
    on the other hand personal datas will be very much subject to
    conflicts of interests/manipulation etc.,since this issue hasn't been as yet totally solved in the digital world (in particular the internet..)

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  5. 5. Quinn the Eskimo 02:08 AM 4/15/10

    Well, my doc went all HP notebooks two years ago. After starring at the back of the screen (the new EHR WALL) he hasn't listened to my heart or lungs once! I've got great printouts of his notes, though.

    Don't know how that'll help my congestive heart failure. Oh well, progress.

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  6. 6. Poaul in reply to Quinn the Eskimo 10:33 AM 5/24/10

    Quite right!!!
    Notes and record keeping is PART of the consultation, not THE consultation. I've just had a disturbing chat with an Australian, where the doctor 99% of the time simply listen to the list of symptoms, and without examination, dispences treatment. I still write my notes by hand, after taking a history and doing an examination, draw up a conclusion and advice treatment. Call me old-fashioned, but I'm a far better doctor than a walking MBChB with an HP.

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