Compiling Your Medical History: Getting Started

A quick note: Everything written here is from my own personal experience, I am not a medical professional, and nothing in this blog should be construed as medical advice. Please contact your doctor or another medical professional for any advice and information on your own health. 

Also, laws regarding medical records and patient privacy differ from country to country. Please consult your local laws to find out how they apply to you and your medical records. 

 

Time to get to list-making!

Managing life with chronic illness is hard. There’s an understatement. As anyone who lives with chronic illness knows, it’s often a balancing act of dealing with doctors and their offices, managing the symptoms that you can, making sure you’re doing the things you should do to maintain whatever your normal looks like (whether that’s nutrition, gentle movement and stretching, or knowing when to throw the towel in for the day, and rest through the flare), and keeping records of your medical history, how you feel day-to-day, and what works and what doesn’t.

 

Photo by energepic.com from Pexels

So what can we do to make these things at least a little easier? I am a list-maker and note-taker. That’s how I deal with giant looming tasks and projects. Even with grocery shopping, I have notebooks full of lists, price comparisons, and recipe ingredients. Once it all comes together, it’s a beautiful, organized thing, helping the family get the food we need for the best possible price, with some meal planning thrown in for good measure. The process looks like chicken scratch and chaos. Health record-keeping and list-making aren’t grocery shopping, but some of the principles I use for one apply pretty well to the other.

Just dealing with doctors can be daunting. I have an autoimmune disorder, so I have a rheumatologist. I deal with chronic pain and limited mobility, so that part is remanded to my pain and rehabilitation specialist. Skin issues go to my dermatologist. I have other musculoskeletal and neurological issues that should be handled by an orthopedic and neurosurgeon respectively, but I’m still on the hunt for the right doctors for those roles. My primary care doctor tries to put all these puzzle pieces together, and deal with me holistically, in addition to any weird issues, like infections from being immunocompromised and lower extremity lymphedema from goodness-knows-what. She does her best to order the necessary bloodwork and keep everything straight, but it’s a daunting task.

The most helpful thing I did for our primary care doctor the first time we saw her was write up pretty complete medical history binders for both me and the Hubs. We both have complicated, long medical histories, that would be really difficult to cover in one appointment. The binder has all medical events listed, along with a detailed history of each condition with signs and symptoms, onset, treatments we’ve tried (and how well they did or didn’t work), and any labs or imaging studies. She and her office really appreciated them.

A medical history folder can be used by anyone, but it is especially helpful for those with complex and/or multiple health issues. Let's get into the process of putting that folder together.

Here's a quick guide that touches on all the things you'll want to include in your medical history:

• All conditions you've been diagnosed with, including:
• Date of onset
• Date of diagnosis (often different from onset)
• Symptoms
• Tests
• Diagnosis
• Treatment and outcome
• Was the treatment successful?
• Were there any side effects?
• List of doctors seen, the reason for visits, and date range of care
• Hospitalizations and surgeries
• Family history
• Current Medications
• Past medications
• Include why it was prescribed, when you took it, why it was stopped

Starting Out

The first thing I did was sit down with a fresh, new notebook, and started writing down all the conditions I've been treated for, currently and in the past. It seems obvious, but I was surprised at the things I remembered once I started making my list. Especially with chronic illness, some things get forgotten, sort of pushed out by bigger issues. For instance, I have a few "big ticket" conditions that take center stage: chronic migraine, spondylolisthesis, and psoriatic arthritis. When focusing on those, they can push out smaller, but still important issues; I am staph positive, which means I have to pretreat my skin before any procedures with a special antibacterial wash and have to be on the lookout for any signs of infection. I often forget about it when dealing with doctors, because it's not a daily concern. It's one of those things that I only think about when it's a problem.

 

My initial condition list. I added to it over a few days.

Once your list is done, leave it for a day or two. There will be other issues that pop into your head that you wouldn't have remembered otherwise. 

The next list to make is a list of all the doctors you've seen, clinics you've visited, and hospitals where you've been admitted or had procedures done. Be sure to list all the doctors you've seen, even once. I know when I was diagnosed with chronic migraine I saw quite a few different doctors before I got the help I needed. It took me a little while to remember all of them. Electronic records can help with this since many doctors are part of larger hospital groups, so you can find many under one umbrella, on the patient portal website. 

After making your list, it's time to get copies of all the records connected to your conditions. In the United States, HIPAA, the Health Insurance Portability and Accountability Act, gives patients the right to access their medical records. With multiple health systems and medical practices, it can be quite the project to get all of that information together. Electronic records can make this much easier than it used to be. At least in the United States, many medical organizations give patients access to their medical records through an online patient portal. There you can usually get access to chart notes, lab reports, and many other records of your information. If your doctor, clinic, or hospital doesn't have online access, you will have to get those records the old-fashioned way. You can contact your doctor's office, and many times they will have a short form for you to fill out requesting your records. If they don't have a form, you can submit your request in writing, through a letter. You can request records for yourself, or for someone you have guardianship over. Records can also be requested by caregivers who have been given written permission by the patient to access their records. Sidenote: The Hubs and I always make sure each has access to the other’s records. It usually only requires filling out a one-page form for the patient to give permission for access. This way, if either of us is unable to contact an office for information, the other is able to handle it. It’s always good to have someone you trust have access to your doctors and your medical information.

 

If you have to request records through a letter, here is the information you should include:

• Name, including any alternate (like maiden or married) names
• Social Security number, or medical record number, if you know it
• Some folks are uncomfortable giving their social, because of the risk of identity theft. If that's the case you can leave it out.
• Date of Birth
• Address
• Phone number
• Email
• List of records being requested
• You can specifically ask for test results, or chart notes, consultation with specialists, or request a summary of your medical records. 
• Dates of service
• Delivery preference
• Email, fax, or mail

If you have difficulty getting test results from your doctors, you can request them directly from the testing facility, hospital, or lab. They may also be able to provide more complete reports. I have noticed that both Lab Corp and Quest have patient portals you can sign up for to get results delivered to you electronically. The Hubs has to have regular MRIs to follow some of his conditions. Every time he goes, we ask to sign a release so the hospital can send us a copy of the report and a CD of the actual scan.  

Once you get all your records, whether electronic or printed, it's time to organize and sort them. 

 

You may or may not have quite as big a stack as I did.

With electronic records, you can save copies to your computer or print them out. I chose to print them because I was making a physical folder to give directly to my doctor. You can sort the records a few different ways. For my own records, I keep them filed by provider and chronologically, and keep a copy filed here at home. For the folder, I sorted them based on condition.  I felt they were most valuable this way since that's how I will be breaking things down in the document. It makes more sense to have relevant records and reports with each condition, rather than having to flip through records and reports to find what you need. 

For example, under migraine, I sorted all EEGs, brain MRIs, MRAs, and carotid artery studies, as well as any relevant bloodwork done by the neurologists or headache specialists I saw. Those are organized by date and provider. That section will have my summary of symptoms, diagnosis, and treatment, followed by copies of those records.

These records are just the basis of what gets put together for the file. It's important to have all those documents in one place. The chart notes, specialist letters, and test results will help you write the summaries for each of your conditions.

This is probably a good place to stop. We’ve covered why a medical history folder is helpful, what should go into it, and how to get your records, at least if you live in the United States. The next blog post will go through how to write up those condition summaries. I hope you’re finding all this information helpful. Like I said at the beginning, all this list-making helps me find order in the chaos. It allows me to take something daunting and make it manageable, all while helping the medical professionals caring for my conditions get a better picture of my health over time. I hope this post has helped you in some way as well. Please comment with any questions or any other information you’d like me to cover or expand on.