Track Health Information | Aplastic Anemia and MDS International Foundation

Track Health Information

Keeping track of your medical records and health information can be quite a task. Yet being able to put your hands on paperwork you need within minutes can be extremely helpful as you prepare for a medical appointment or advocate for your health. It also helps you know how your disease is progressing and how well your treatment is working.

Request a copy of all your health records from all of your healthcare providers, including your general practitioner, eye doctor, dentist and any other specialists you have seen. Whether or you decide to use some type of formal personal health record (PHR) tool, or just keep your records in a folder or file box, collecting all your health records is an important step.

A federal law, the HIPAA Privacy Rule, gives you the right to see, get a copy of, and amend your medical records. Most states also have laws that give you access to your records. The Center on Medical Record Rights and Privacy has information on laws and procedures for obtaining your health records in all 50 states. 

Ask for Copies of Health Records at Each Visit

It can be difficult to get your health records weeks or months after a doctor's visit. Different states have different rules. Sometimes you need to complete an application, and sometimes there is a fee. It is a good idea to ask for key health records at the end of each visit, including test results and transfusion records.

Create Your Own Complete Personal Health Record (PHR)

If you don't have one, now may be the time create a complete personal health record, or PHR for short. The PHR is tool that you can use to collect, track and share past and current health information about your health. It can be paper-based, software-based (runs on your computer) or web-based. A complete PHR helps your healthcare providers understand your personal health story, avoid unnecessary tests and procedures, and reduce the chance of medical errors.

To learn more about creating a PNR go to www.MyPHR.com and read their quick guide. This guide provides 7 simple steps to creating your own PHR. This website also allow you to search for PHR Tools. This site is a service of the American Health Information Management Association (AHIMA).

Use Our Treatment Tracking Tool

AAMDSIF offers Treatment Tracking Tools to help patients monitor their progress, record their reaction to therapies, and even track their medication. They allow patients to track their daily symptoms and treatment progress. They are available for iPhone and Android, and there is even a downloadable spreadsheet or PDF form. This information can be shared with doctors and family, allowing everyone to see progress with treatments or supportive therapies over time.

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 any of this information. It is also advised that you locate hospitals, pharmacies, and other medical facilities near your destination.