Fragmented care: a hospitalist’s dilemma

by Fabienne Bourgeois on December 14, 2010

Without records, every patient is a black box (Image: Pedro Vera/Flickr)

Recently, I was admitting a patient to the general pediatrics service who was followed by several specialists from different hospitals, required a number of medications and was quite ill. We were obliged to start treatment immediately given the severity of his illness, but unfortunately, this was his first visit to Children’s Hospital Boston and none of his records were available to us.

He and his mother vaguely knew his medications, but some of them had recently been changed, and they were unsure of the dosages. As this was an unexpected hospital visit, they did not have a list available or the prescription bottles on hand. Multiple phone calls and many hours later, we were finally able to convene what we hoped was an accurate list of medications, medical problems and allergies to ensure that we were giving him the proper treatments without putting him at risk for medication interactions or other adverse events.

Online tools and software are widely available to manage a multitude of aspects of our lives — our banking, taxes, calendars, and even music and movies. These systems can rapidly aggregate and arrange information from different sources into one simple, easily perusable place at the press of a button.

But when it comes to managing our health, such online systems are conspicuously lacking or, when they exist, inadequate. Patients and families are expected to remember, organize and manage what is frequently an overwhelming amount of complicated information. The recommendations and prescriptions of one specialist must be added to that of another, appointments in various locations must be noted, and diet and exercise recommendations must be implemented. When health care providers themselves lack access to a patient’s complete medical record, they often must rely on patients or their families to keep them abreast.

In a recent analysis of all acute care visits in Massachusetts from 2002-2007, we found that a large proportion of adults seek care at multiple hospitals. It’s unclear why they receive care at different sites — relocation, geographic convenience, displeasure with a previous hospital or other reasons — but they all end up in a new hospital system that typically has limited or no access to records describing their medical conditions and prior care.

This fragmented situation places patients at great risk for less-than-optimal or even inappropriate care. Despite every clinician’s best efforts and intentions, there are countless anecdotes of patients receiving the wrong medications, wrong doses or unnecessary tests simply because their records weren’t readily available.

I think this problem can be solved. Multiple stakeholders, including the federal government, are making substantial investments to build and promote systems to allow health information exchange between institutions, and to give patients and their families access to this information. One important option is personally controlled health records. Most systems are still in their infancy, allowing access to select information, such as the patient portal at Children’s Hospital Boston (mychildrens.org), but as these systems mature, they will allow greater and more complete access to health information across care sites — by patients and clinicians alike — promoting safer and more effective care.

Hopefully, in the near future, I will have immediate access to a patient’s complete record at the time he’s admitted. I’ll be able to initiate treatments without delay, without worrying that I am putting him at risk for complications or subjecting him to unnecessary tests.

Fabienne Bourgeois, MD, MPH, is a Pediatric Hospitalist at Children’s Hospital Boston.

9 comments

  • Maithgoleor

    This is a challenge BUT as a Mom to 3 very complex medical patients, sometimes it is because there are transitions of treating physicians between hospitals, and a specialist of extraordinary skill that is located somewhere else is still preferred for other care. As a Children’s hospital, you are our carer of choice for multiple issues or emergent needs my kids may have, but when it comes to structural damage or a question about the ‘physical’ airway, our other hospital is the first stop on our list.

    I would say that just under a year ago, the issue was not only that it was our first use of CHB’s ED, it was also that providers failed to access medical records available through our CHB doctor as well. This failure caused treatment of one of my children in a way that contradicted medical records available WITHIN your hospital system. Here’s hoping that “kink” has been worked out as well.

    • Fabienne Bourgeois

      Seeking care at multiple hospitals and clinics is often necessary and in the best interest of a patient. The key is to address and resolve the resultant fragmentation of medical information in order to ensure that a patient’s complete medical record is available wherever she goes. Current solutions that are being developed include mechanisms to share information electronically between institutions and supplying patients with web-based personally controlled health records that contain a copy of their full record.
      Your point is well taken that even within an institution, including Children’s, accessing information can be a challenge and isn’t what it should be. We should all try to do better. It is important for any system to ensure that a patient’s medical information is both readily accessible and can be displayed in a manner that allows a user to efficiently review the patient’s medical information in order to make safe and informed decisions.

      • Ginnym

        While it is important to understand your valid points, once complex “kids” turn 18, it does not matter how mental illness, learning disabilities, and capabilities affect them. As far as the electronic record and accessing their personal files they are now “adults” at 18 and the process is a complex one. It was too complex for my son when we needed that access when he was just out of a hospital stay in an adult facility that CHB could not provide. We asked for assistance because I was not able to access his record as his parent. He has not been able to obtain his electronic record either. This precludes his ability to connect this to other facilities he must use. Multiple facilities is the only way he can see his current complex needs met in his “adult” status now that his most recent CHB doctor has advised him to “seek doctors in his area of expertise and closer to home”. Even after explaining that these are only 20 miles closer than CHB. We continue with one service at CHB and are grateful to have that care of the 3 we once had. We carry his records with us for ED care.

        Thank you for this important article. Complex children lead to more complexity in the adult world.

  • Maithgoleor

    This is a challenge BUT as a Mom to 3 very complex medical patients, sometimes it is because there are transitions of treating physicians between hospitals, and a specialist of extraordinary skill that is located somewhere else is still preferred for other care. As a Children's hospital, you are our carer of choice for multiple issues or emergent needs my kids may have, but when it comes to structural damage or a question about the 'physical' airway, our other hospital is the first stop on our list.

    I would say that just under a year ago, the issue was not only that it was our first use of CHB's ED, it was also that providers failed to access medical records available through our CHB doctor as well. This failure caused treatment of one of my children in a way that contradicted medical records available WITHIN your hospital system. Here's hoping that “kink” has been worked out as well.

    • Fabienne Bourgeois

      Seeking care at multiple hospitals and clinics is often necessary and in the best interest of a patient. The key is to address and resolve the resultant fragmentation of medical information in order to ensure that a patient's complete medical record is available wherever she goes. Current solutions that are being developed include mechanisms to share information electronically between institutions and supplying patients with web-based personally controlled health records that contain a copy of their full record.
      Your point is well taken that even within an institution, including Children’s, accessing information can be a challenge and isn’t what it should be. We should all try to do better. It is important for any system to ensure that a patient's medical information is both readily accessible and can be displayed in a manner that allows a user to efficiently review the patient's medical information in order to make safe and informed decisions.

      • Ginnym

        While it is important to understand your valid points, once complex “kids” turn 18, it does not matter how mental illness, learning disabilities, and capabilities affect them. As far as the electronic record and accessing their personal files they are now “adults” at 18 and the process is a complex one. It was too complex for my son when we needed that access when he was just out of a hospital stay in an adult facility that CHB could not provide. We asked for assistance because I was not able to access his record as his parent. He has not been able to obtain his electronic record either. This precludes his ability to connect this to other facilities he must use. Multiple facilities is the only way he can see his current complex needs met in his “adult” status now that his most recent CHB doctor has advised him to “seek doctors in his area of expertise and closer to home”. Even after explaining that these are only 20 miles closer than CHB. We continue with one service at CHB and are grateful to have that care of the 3 we once had. We carry his records with us for ED care.

        Thank you for this important article. Complex children lead to more complexity in the adult world.

        • nansona

          Accept

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  • Nurse Anne

    A huge problem is the misguided HIPAA regulations that discourage providers to talk to one another. Working as a nurse in a pediatric clinic, I encountered resistance from nurses at other medical offices — “I can’t talk to you about little Joey because of HIPAA” — when, in fact, it was OUR office that referred Joey there!
    I would like to see a study undertaken to determine if HIPAA regulations have helped or hindered medical care since they were enacted in 1996. I think I already know the answer.

  • Nurse Anne

    A huge problem is the misguided HIPAA regulations that discourage providers to talk to one another. Working as a nurse in a pediatric clinic, I encountered resistance from nurses at other medical offices — “I can't talk to you about little Joey because of HIPAA” — when, in fact, it was OUR office that referred Joey there!
    I would like to see a study undertaken to determine if HIPAA regulations have helped or hindered medical care since they were enacted in 1996. I think I already know the answer.

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