There are many reasons to keep track of your own medical records. 

Recordkeeping is a worthwhile investment for your long-term health and quality of life. Research has shown that patients who self-advocate by personally managing their medical records have also “enjoyed better health.” If you have PF, here are additional reasons that recordkeeping can help: 

  • Looking at your medical records can help you better understand your diagnosis and prognosis. It allows you to learn what kinds of tests are being run, what kinds of questions you need to ask your doctor, and more. The more you know, the more effectively and confidently you can self-advocate. 
  • Gathering records helps you and your healthcare team keep track of progress and achieve your goals more thoughtfully, intentionally, and efficiently. 
  • Having your records saved makes it easier to apply for and ultimately be approved for social services and supports (such as Medicare, disability benefits, and local community-based programs). 
  • Seeing summaries of your appointments & notes can help you notice any mistakes that doctors may have made, and prevent any potential medical errors or issues in the future.
  • In an emergency, you can share your health history with a hospital as easily and quickly as possible. 
  • Caregivers and/or family can be better prepared to provide you with the support you need. Being able to review detailed records can help them understand your medical needs and take full responsibility for your health and safety. 
  • Recordkeeping can help you recall treatment options that may have helped or hurt in the past, and make more informed decisions in the future. 
  • Having copies of your files also makes it easier to get a second opinion, and faster to set up appointments with a new doctor or specialist.
  • Keeping track of your records can help if you need to contact your insurance company, file a claim, or make an appeal.

If you’d like to start recordkeeping yourself, here is some of the information to consider gathering and organizing: 

  • Medical history and family medical history
  • An up-to-date list of current medications, supplements, treatments, and immunizations
  • Notes you’ve taken yourself to track nutrition, symptoms, sleep records, quality of life, oxygen saturation, and more
  • Start and end dates for treatments, including the results and any side effects experienced
  • A schedule for future appointments 
  • Contact information for doctors, centers, or facilities where you’ve received treatment in the past. You can list emergency contacts (friends or family) too.
  • A list of allergies and past surgeries or procedures
  • Results from past lab tests, including bloodwork
  • Results of your pulmonary function tests (FVC, FEV1 and DLCO numbers)
  • Results of any radiology tests, such as CAT scans or x-rays
  • Pathology reports of any biopsies
  • Hospital discharge summaries
  • Clinical notes from appointments with your doctor or other PF specialists
  • Notes on any palliative care you’ve received 

Some people also decide to include legal documents in case they become too ill to make medical decisions for themselves. Depending on which state you live in, this can look like advance directives, a living will, or paperwork showing who has power of attorney for healthcare decisions. 

The hardest part of recordkeeping is getting started. To help, we provide free templates for tracking weekly updates and managing your treatment plan. Next time a friend or relative asks how they can support you, consider having them help you start your personal records. Once you’ve gathered the essential information and determined how to store it, it’s simply a matter of keeping your records current. 


Do you keep track of your medical records? Comment below to share your experience, and please let us know if there are additional templates you’d like! For encouragement or more recordkeeping ideas, please sign up for our support group and join our community forum.

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