Your care is fragmented, here’s how to fix it

If your computer has ever slowed way down you may have been advised to “defrag,” which puts all parts of a file together in the same place on the drive, enabling it to run faster and more efficiently. In much the same way, your health care needs to be defragged. For most people, health care is extremely fragmented, creating errors, delaying diagnoses and treatment and increasing costs.

Even for the very healthy, the burden of keeping even two or three different doctors apprised of what you’re experiencing is typically on you. No one else is doing it.

When I had a small basal carcinoma removed from my back last year by a physician’s assistant at a dermatologist’s practice, no one told my primary physician or sent a copy of the pathology report to that office. So I did. If you break a bone snowboarding, no one automatically tells your physician back home. If your ophthalmologist sees signs of cardiovascular disease during an eye exam, he or she is unlikely to ask if it’s OK to send the information to your physician.

You have to be the central communicator. Unfortunately, that role requires a fairly high level of knowledge about medicine and the ability to pry written information from one specialist so you can deliver it to another.

The more complicated your problems, the more fragmented your care will be. The average Medicare patient sees two physicians and five specialists a year, (according to The Fragmentation of American Health Care: Cases and Solutions, edited by Einer Elhage). Those with a chronic illness see an average of 13 physicians a year. A Medicare patient with coronary artery disease sees ten physicians in six distinct practices annually. Indeed, the more physicians following someone after a heart attack, the lower the survival rates.

It’s important you know that there is no little Tinkerbell picking up your medical records and automatically delivering them to the physicians in your life who should know what’s happening with you. Consider yourself the the person most responsible to collect written updates, copies of test results and lists of new and changed medications and get them to all your other healthcare providers.

What can you do?

  1. When you get a test result, procedure or have surgery, get the summary in writing, keep a copy, and send or bring copies to all your other healthcare providers. Attach a simple note: “Wanted to keep you up- to-date on my health status. Please put this in my chart.” If it’s an important healthcare issue, be sure to bring up the data or  problem at your next visit and mention that you sent a written summary for inclusion in your medical record.
  2. Keep a list of all your medications and update it any time a healthcare provider adds or deletes a drug or changes a dosage. Bring a copy of that list to your medical appointments and to the emergency room if you end up there.
  3. Don’t leave your dentist or your optometrist/ophthalmologist out of the loop. They need to know the details of your general health status. It will help them diagnose and treat any issues they may identify with you. Be sure they know if you have any infections, immune issues, heart problems, chronic conditions or are taking blood thinners or antibiotics, as well as other medications.
  4. If you have a test or procedure and you do not hear the results soon afterwards, do not assume the results were normal. Call the healthcare provider who ordered the test and ask the office staff to email or send you a written copy of the test summary. Keep a copy in your own “medical updates” file. If the test was indeed OK, you still should have copy for reference at a later time, if needed.
  5. If you or someone you love ends up in the hospital, your role of communicator will be even more vital. Often multiple consulting physicians — specialists — are called by the admitting physician to weigh in on issues and questions that develop while you’re in the hospital. They don’t always talk to each other or even realize who has changed or added a medication, who has ordered a test, or what results are in. The more you communicate the better. If you are being asked to go back for a test you already had or if you have questions about what is happening, don’t assume someone at the “nurses’ station” has it all managed. Ask questions and be sure you understand what tests you’re getting and why. If you are being discharged from the hospital ask for the results of any tests or procedures you had in the hospital.

Defragging your health care may sound overwhelming. It’s actually usually not so hard. Just remember: get written copies of every test, procedure and surgery, keep a copy of each for yourself (you’ll be the only person on earth with a complete copy of your own medical record, by the way), and give copies to your healthcare providers. Ask questions when you don’t understand why someone wants to order a test for you. Bring a knowledgeable person along with you to healthcare appointments, if you like.

Be the hub of the wheel. Of everyone involved in your health care, you’re the one with the most at stake.

Barbara Bronson Gray is a nurse who blogs at BodBoss.

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  • sFord48

    The easiest way to get all your information in one place is to get your medical care in a big integrated, hospital based healthcare system with electronic records.

    • http://warmsocks.wordpress.com/ WarmSocks

      The author of this post has it exactly right.  Patients need to maintain our own records if we want to ensure that everything is in one place.

      I have not seen an integrated EMR’s.  ER has one EMR, hospital floors have a different EMR.  Clinics attached to that hospital have their own EMRs that don’t share information with the hospital, nor with one another.  I can see my rheumatologist in suite 315, then go next door to my gastroenterologist in suite 317, and they might as well be in different countries because they do not share any information whatsoever, nor do they have access to the hospital’s EMR.  Then I go down a flight of stairs to see the surgeon, and he has an entirely different EMR. 

      The OR is just as bad – well, maybe it’s worse.  I went in for surgery and all information was entered into the EMR.  Three weeks later I returned for a follow-up procedure with the same physician in the exact same operating room, but since that second procedure was considered “outpatient,” check-in was in room 105 instead of 103 and they had no access to my previous records because that hospital uses a different EMR depending on which room you check in through.

      Since I have to maintain my records, I’d prefer not to be locked into a single system. It’s nice to have the freedom to search for the best doctor, hopping between different systems when needed.

  • http://www.facebook.com/profile.php?id=1624302541 Bruce Ramshaw

    Shouldn’t we transform our healthcare system structure to eliminate fragmentation?  It sounds challenging, but it will be worth it.

  • http://twitter.com/AlexanderELewis Alexander Lewis

    Great post, check out the book White Coat Wrinkle by Dr. James Devore for more!

  • JCPM

    Do you think that health information exchanges (HIE’s) could remedy fragmented care? It seems that there are models that address each  of the 5 points that you list above.  Making this care coordination a responsibility of the patient is haphazard since not all patients have the capacity to manage their care, and the most vulnerable patients are the least likely to be able to do this.

  • http://www.linkedin.com/in/annelizhannan Anneliz Hannan

    Having an advocate with you at appointments/tests can be a great advantage, especially for seniors. Stress and fear often interfere with keeping focused, gathering information and retaining instructions for meds. Nice post Barbara

  • http://twitter.com/livewellthy Stewart Segal

    Excellent article.  I would go the next step and suggest that you scan the data to your healthcare thumb drive and keep it with you in case of emergency.  HIE’s are currently in the realm of science fiction.

    Nothing will ever best personal responsibility for your own health!

    • sFord48

      Thumb drive?  You could keep in the cloud and access it from your phone.

  • http://www.bryantsstatisticalconsulting.com Donald Tex Bryant

    It will be interesting to see how far the Stage 2 of CMS’s EHR adoption program will propel the integration of HIE’s.

  • civisisus

    “….Even for the very healthy, the burden of keeping even two or three different doctors apprised of what you’re experiencing is typically on you. No one else is doing it….”

    “….You have to be the central communicator. Unfortunately, that role requires a fairly high level of knowledge about medicine and the ability to pry written information from one specialist so you can deliver it to another.

    The more complicated your problems, the more fragmented your care will be….”

    Meanwhile, the leading retail clinic operators, where care is provided by “mere” nurse practitioners and physician assistants, all feature post-visit communication to your primary care provider or others you designate as a matter of course – not an extra-charge item, not an insider’s favor, not a 1-percenters’ perk. 

    And STILL too many physicians express concern that this emerging form of routine care is to be regarded warily, not as disrupting their closed-system practice habits, but as being clinically perilous for “their” patients. 

    Yet there are people who are practically eager to throw in the towel on health reform…..

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