Medical records can be a bewildering mess, so we asked a reimbursement expert, a patient advocate and a rare disease patient how to organize and track complicated medical histories. Here’s what they recommend:
Kris McFalls, Senior Manager for Reimbursement and Access at CSL Behring
In addition to nearly three decades in the biopharmaceuticals industry, McFalls also raised two sons who have rare diseases. Her top tip is to review your records often for inaccuracies or important facts that may have slipped through the cracks. She also offers this advice, especially when you must document the need for certain medicines or treatments:
Communicate electronically. Communications between the patient and the health care professional become part of the medical record and can be used to help justify treatment.
Create a profile on your payer’s website. Check frequently to ensure your bills are being adjudicated correctly. Doing so can also help you quickly identify things like copay accumulators and maximizers that could have a big impact on your out of pocket costs. If you have copay assistance, this is extremely important information to know.
Keep copies of all lab work. Paper or digital is fine. If going digital, save them on both your hard drive and your cloud storage.
Keep a health journal. If you have an attack, a bleed or an infection – treat it, record it and report it. And in the case of infection, see a physician. Insurance companies do not count the act of calling in a prescription for an infection as documentation of an infection. It must be noted by a health care professional.
Aimee Zehner, Rare Disease Advocate
Zehner, who is also the founder and CEO of EveryBody Empowered, recommends keeping both digital and hard copies of records in a physical folder or binder. Make sure your files are comprehensive and include these categories:
Basic patient info: This should include demographics and insurance information, any allergies, a list of diagnosed health conditions and current medications as well as medications taken in the past.
Medical records: Organize these into subfolders by department or specialization, then by provider. Include all doctor's notes, visit summaries, lab results and any imaging or specialized tests (with CDs and results included) ordered by that doctor. Sort them in chronological order by date, with the most recent towards the front.
Journal of symptoms: For each, include a description, the severity, frequency and duration, the date and time when it started, anything that may have contributed to it, anything that makes it better or worse and any other relevant information. Symptoms may not be visible to the naked eye, which is why it is extremely important for patients and/or their loved ones or caregivers to record their symptoms while they occur.
Photographic evidence: If a patient's symptoms are visible but not constant, the provider may not be able to witness the symptoms while they occur. Unfortunately, physicians and specialists must rely upon tangible evidence to help prove a diagnosis. Pictures or videos can help a provider determine the correct diagnosis.
Rachel Escio, Chronic Illness Patient
Escio, a public relations specialist who has struggled with fatigue, recalls the burden of documenting her condition. She suggests organizing your medical records in two levels:
Bird’s-eye view: First, to maintain a clear understanding of the big picture, keep an all-purpose book to hold your prescriptions, test results, appointment records and even receipts. Knowing the sequence of your own story will lead you in the direction of recovery.
Day-to-day: Second, monitor specific complaints in a smaller diary that you can carry around and bring to your bedside when you get home, for more convenient tracking. This should be your immediate reference for pressing matters, including recording when you've taken your medication and its dosage. A focused record like this can help with efficient management.
Lynne Doebber, Primary Immunodeficiency Patient
Doebber was diagnosed in her 50s with common variable immunodeficiency (CVID) and is known for her methodical, organized approach to all aspects of her medical condition. She manages her health records with the same attention to detail, but says it’s still a patchwork.
She would like to shift away from paper records and toward the health portals offered by doctor offices and hospitals, but it’s not that simple. Because she sees multiple doctors, she has to navigate four portals with different interfaces and log in credentials. Doebber once tried to send info from one doctor to another and the portals wouldn’t talk to each other.
“I’m kind of portaled out,” she said, though she appreciates the option to access and print info, like recent lab work.
Here are her tips:
Create a three-ring binder of current medications, vaccination history and recent blood test results. Taking this to appointments helps me answer commonly asked questions and prevents duplicate blood tests.
Keep a running list of questions for your doctor. I track them on a clipboard and flag my top concerns in pink highlighter.
Learn what your online health care portals can do and what they don’t do very well. For instance, mine are great for requesting prescription refills, but it might not be the best way to contact the doctor. Some will communicate through the portal and others won’t.
