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 might need to be de-fragged. For most people, finding and using health care is extremely fragmented, which in turn creates errors, delays diagnoses and treatment, and increases 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). People with a chronic illness see an average of 13 physicians a year. A Medicare patient with coronary artery disease will commonly see ten physicians in six distinct practices annually. Regrettably, the more physicians following someone after a heart attack, the lower the survival rates.
It's important you know that there is rarely anyone or any system to coordinate your medical records and automatically deliver them to the physicians in your life. Instead you (or a trusted caregiver) are the person that is responsible for collecting written updates, copies of test results and lists of new and changed medications and getting them to all your other healthcare providers.
What can you do?
- 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.
- 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.
- 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.
- 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.
- 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.
De-fragging your health care may sound over-whelming. It may take practice and multiple efforts on your part.' 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.
You are hub of the wheel. Of everyone involved in your health care, you're the one with the most at stake.