Pillar 4: Keep Careful Track of Health Information

An organized patient is a powerful patient!

Keeping track of your medical records and health information can be quite a task. Yet being able to put your fingers on paperwork you need with a moment's notice can be very helpful as you advocate for your health.

While it may not come naturally to you to ask for your health records, gaining this assertiveness skill can help you feel in control of your health. 

Keeping all your medical information organized and in one place makes it easier to track changes in your health, see if treatments are working, and share information with your healthcare provider.

Feeling overwhelmed by paperwork? Seek help from members of your support team or find a professional advocate. Learn more in Pillar 5: Build a Strong Personal Support Team.

I notice changes... -Stephen

I notice changes in my body. I know its rhythms. Pay attention to what your body tells you and give that information to your medical team.

Try these tips for getting organized. They have worked for others and they can work for you.

Take Notes

Keep a log of changes in how you feel. Some of these changes may be symptoms of your disease. Others may be side effects of treatment. This is key information that only you can provide.

Keep a running list of questions to ask providers. And record your healthcare providers' answers. Include what they say over the phone and via email, as well as during office visits.

Gather Information

Collect information about your health, office visits, and treatment in one place. Don't feel that you must gather all of your health information at once. The next time you visit the doctor, simply ask for recent records, and do so each time you visit a healthcare provider.

Here are some of the items you'll want to hold onto:   

Health information

  • Allergies
  • Immunizations you have had
  • Notes on symptoms
  • Personal health history and family health history

Office visit information

  • Dates of office visits
  • Notes on what providers tell you 
  • Questions to ask healthcare providers

Treatment information

  • List of medicines, vitamins, herbs, and supplements you have used
  • Notes on side effects 
  • Transfusions you have had
  • Treatment instructions

Financial and legal information

  • Insurance claims - paid and unpaid (You can appeal claims that are denied by your insurance company. Call your insurance company for steps to take to appeal.)

Contact information

  • Family and friends
  • Other patients
  • Pharmacy - note when they are open
  • Healthcare providers - note when they have office hours and their after hours emergency contact information
  • Insurance - note when they are open to handle subscriber service calls

Find an Organization System that Works for You

Now that you have all this information, you need to figure out the best way for you to keep it organized and in one place. Here are some tools other patients have found useful:

  • 3-ring binder with dividers
  • Accordion folder
  • Electronic files and spreadsheets on a laptop or desktop computer, tablet, or smart phone
  • Manila file folders
  • Notebook or journal
  • Online tools such as a personal electronic health record, or EHR for short

Since I take copies of my lab work with me... -Harvey

Since I take copies of my lab work with me when I travel, I always make photocopies to leave at home in case I lose this important paperwork. I would suggest making a couple of photocopies of all important medical papers. In my view, being able to put my hands on my health records at a moment's notice is a critical part of self-advocacy.

Remember - there's no right way to compile or organize. Use the tools that work best for you.

Share Information

Share your medical information with providers, family, and friends. It will help them stay in the loop so they can assist and support you better.

Take Medical Records With You When Traveling

Going on a trip? Be sure to take your medical information with you. You never know when you might need it. It is also a good idea to have a current medication list in your wallet or purse in case of emergency. Just make sure to make photocopies and leave a set at home in case you lose the any of this information.

If you are going on a trip, it is also advised that you locate hospitals, pharmacies, and other medical facilities near your destination. You can include this information in your healthcare files.

Learn more