Many people with a rare disease diagnosis visit multiple doctors as part of the treatment and management of their disease.
As a result, keeping track of personal medical information can be a challenge. However, accurate record-keeping is important for ensuring successful management of your disease. It is also an important way to enhance communication of timely information with your healthcare providers.
The best way to accomplish accurate record keeping is to maintain a personal health record (PHR). This document allows you to gather and manage all your health information in one easily accessible location.
Electronic Personal Health Record
Most health providers these days use electronic medical record systems to record information about medical tests and visits.
Unfortunately, these rarely communicate between one health system and another. If a person is seen by health providers at different institutions or private practices, the medical records at one are usually not visible by the other.
Many electronic health record systems include an online portal. This allows a patient to see some of their medical information and test results; they can print or save them as an electronic copy to share with other providers. Patients can also provide a signed release of medical records form that authorizes a provider at one practice to send or fax medical records to the other.
That said, it is often a good idea for a person with a rare disorder to keep a personal file of relevant medical information. These can be kept in electronic form or as paper records. Imaging studies can be copied onto CDs and shared with providers as needed.
You may wish to include the following information in your personal health record:
- Information about your diagnosis, including the date you were diagnosed, copies of imaging or other diagnostic tests, and pathology/laboratory reports
- Complete treatment information, including start and end dates as well as results
- and any complications/side effects
- Details of past physical exams, including relevant clinic notes, laboratory reports, and diagnostic testing
- Current immunization records
- Dates and details of other major illnesses, chronic health conditions, and hospitalizations
- Contact information for the doctors and clinics involved in your diagnosis and treatment
- Information about your family medical history
- List of current and previous treatments, procedures, and medications
Keeping Up-To-Date Medical Records
Following are a few strategies that can be helpful in collecting the latest copies of your records on an ongoing basis:
- Ask your doctor or nurse for a copy of the results or report any time you have a diagnostic test or procedure
- At each appointment, ask your doctor or nurse for a copy of any clinic notes added to your file or electronic medical record
- Use a secure online patient portal to access your current medical records
- If you spent time in the hospital, request a copy of your records when discharged
- Keep copies of medical bills and insurance claims as they occur
- Talk to your doctor for guidance about what records to include
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