Dealing with a chronic illness means dealing with many doctors, labs, testing facilities and pharmacies. Because you likely have separate medical records in several different places, it’s a good idea to keep your own Personal Health Record (PHR). This ensures you have a complete medical history in one place that is always available when you need it. Your own PHR will also help:
- You, your family members, and caretakers stay up to date and organized
- Provide a place to record your day to day symptoms and health tracking tools
- Better manage health insurance claims and legal matters should they arise
- Give new doctors the complete and accurate information they need to provide you with the best possible care
- Allow time to read and understand reports and treatment summary’s at home
- Provide important treatment details that you may not remember later on
What to Include in Your Personal Health Record
Your Personal Health Record (PHR) may be stored on paper or electronically. Whichever way is easiest for you, your PHR should include the following information:
- Your diagnosis, including the stage of CKD
- Date you were diagnosed
- Copies of diagnostic test results and pathology reports if applicable
- Complete treatment information, such as medication names, doses and frequency
- Start and end dates for all treatments
- Treatment results, including any complications or side effects
- Information about palliative care, including medications or procedures used to treat pain, nausea, or other side effects, as well as other types of care, such as occupational therapy or nutritional support
- A schedule for follow-up care
- Complete contact information for doctors and treatment centers involved in your diagnosis and treatment
The record should also contain information about other aspects of your health, such as:
- Contact information for other doctors, such as your family doctors (past and current)
- Dates and details of other major illnesses, chronic health conditions like diabetes or heart disease, and hospitalizations
- Your family medical history
- Details of past physical examinations, including cancer screening tests and immunizations
Continuing to Compile your Personal Health Record
If you have recently been diagnosed or are currently in treatment, the best way to compile your PHR is to collect information on an ongoing basis. If you have been dealing with CKD for some time, it is best to start collecting information NOW and you can always go back and play catch up with previous medical records.
- When you have a diagnostic test or procedure, ask for a copy of the test results or procedure report.
- At each appointment, ask for a:
- Treatment Summary
- Lab reports
- Any new information that has been added to your file or electronic medical record
- You may also want to write your own notes to keep track of what happened at the appointment
- If you spend time in a hospital, ask to take a copy of your medical record with you when you leave. (Since April 2003, the federal Health Insurance Portability and Accountability Act (HIPAA) has required doctors and medical facilities to give patients access to their medical records.)
- Consider keeping a health journal or using an app to keep track of your daily symptoms and any side effects you may experience.
- Keep copies of medical bills and insurance claims.
NOTE: Many health care facilities have moved to electronic medical records and you can log into your account and print all of the above.
Organizing and Storing your Personal Health Record
There are different ways to organize the medical information you collect. A filing cabinet, three-ring binder, or simple desktop divider with individual folders can help you keep important information all in one place. Many people organize this information by date, but you can also divide your record into categories, such as tests, medications, and doctor appointments.
If you prefer to use a computer to keep track of your medical information, you can type up notes from your appointments or scan papers into a computer file. You may also store your personal medical record on the Internet through a number of websites that offer eHealth tools either for free or a fee. With your permission, records stored online can be accessed by family members and doctors. If you decide to digitally organize your medical information, be sure to regularly back up your records.
Online Personal Health Record Resources
More and more patients and healthcare providers are turning to e-health tools to access medical information. Here are several online resources that may help you develop and organize your Personal Health Records:
- MyHealth – American Association of Kidney Patients online health tracking tool
- HealthIT.gov – An online Personal Health Records service that you can use to keep track of information from your doctor visits, tests and procedures. You can also document your life outside the doctor’s office and your health priorities, such as tracking your food intake, exercise, and blood pressure. Sometimes, your HealthIT account can link with your doctor’s electronic health records. NOTE: ibluebutton is a smartphone app that integrates with HealthIT.gov
- Microsoft HealthVault – Microsoft HealthVault is a trusted place for people to gather, store, use, and share health information online.
- MyMedicalRecords.com – An online Personal Health Records service (for a fee) that provides secure, easy-to-use multilingual PHRs that enables individuals and families to safely maintain their medical records and other important documents, such as birth certificates, passports, insurance policies and wills, in one central location and instantly access them anytime from anywhere in the world using the Internet.
- WebMD Health Manager – A free and secure Personal Health Record that allows you to securely gather, store, manage and share your own and your family’s health information – when you want, where you want, and with whom you choose. And the WebMD Health Record is more than your personal health history. It’s smart. It works within the WebMD Health Manager to provide you useful information and direct you to tools that you might find helpful.
Personal Health Record Apps
There are several apps available through iTunes and Google Play help organize your personal medical records. Here are four options that are worth considering:
- ibluebutton – Blue Button is a federal initiative that aims to make it easier for consumers to access their health records online. The iBlueButton app allows you to securely access and exchange electronic health records, including X-ray images and reports, lab results and visit summaries, with health care providers—health care providers have access to the iBlueButton Professional version. There is also a veteran-specific version called iBlueButton Veterans.You may also use iBlueButton to store health information such as medications, allergies, medical conditions, emergency contact information and more. Blue Button records may be accessed and downloaded from the following portals:MyMedicare.gov, TRICARE online, Aetna and RelayHealth. You can import and export files by e-mail as well as with cloud services such as Dropbox and apps such as Adobe PDF. Cost: Free download, but additional charges may apply Devices: Android and iOS
- My Medical – is a comprehensive medical app that allows you to keep records for yourself, family members and others in your care.You can track lab and test results using the app’s charting feature, which allows you to use multiple graphs at once. It meets the industry standard Continuity of Care Record format, which makes it easy to transfer records from one system to another. For extra security, data is stored directly to your device and not on a remote server. Cost: Free Trial – Full version for a fee Device: iOS and Android