Once your primary biliary cholangitis (PBC) diagnosis is confirmed, living successfully with it requires a multifaceted approach. It involves making sure you have the right care, manage symptoms, monitor your disease progression and proactively keep track of your tests, labs and scans.
If you change doctors, you will need to be able to transfer your medical history quickly and easily to your new health care provider. Health records are becoming increasingly electronic, making them easier to manage and share.
What is PBC?
Primary biliary cholangitis (PBC) is a rare, chronic autoimmune disease that primarily affects the liver. In PBC, the body’s immune system mistakenly attacks the small bile ducts within the liver, causing inflammation and gradual destruction of these ducts. Bile, a substance essential for digesting fats and removing toxins, becomes trapped in the liver, leading to liver damage over time.
Your personal health record
A personal health record (PHR) is an electronic way to keep track of your health data, derived from self-reported and self-recorded health information such as a symptom log, test results, immunizations, lists of medication and treatments, appointments and medical contacts.
Read more about PBC treatment and care
It is an easy way to keep your health records up to date and also to control access to the information from your smartphone or computer. It is maintained in an electronic application or system and can easily connect to a health care provider’s system to share your medical information.
When you live with a chronic disease such as PBC, the PHR facilitates close monitoring of symptoms, test results and the effect of the disease on your daily life. It also promotes a proactive approach to self-management and care, encouraging you to have more ownership of your chronic disease management.
If you are more comfortable using physical copies of test results, X-rays, immunization records and prescriptions, or a medical log book of your records, create your own filing system that is easily accessible. Keep it up to date and protect paper documents so they don’t become damaged.
Your electronic health record
Your electronic health record (EHR) is maintained by your primary health care provider. The digitization of patient records has become more widespread in recent years, replacing hard copies. An electronic health record contains information on your medical history, clinical notes, test results and prescribing history and medications.
Changing doctors: transferring your EHR
You may need to change doctors if you relocate, if you are dissatisfied with your care or if you’d like a second opinion. If you change doctors, you will need to request your EHR be transferred to your new health care provider.
Not all doctors use electronic files, so you may need to fill out a request form for copies to be made and shipped to your new doctor. Ask your doctor’s office how to proceed, the cost involved and the time it will take.
If your doctor uses an electronic system, you will need to follow the specific procedure to download your medical records. In some cases, if your previous doctor and new one use the same software or system, a direct transfer may be possible.
Ask your doctor for the steps to follow and how long it will take to complete the transfer.
