What is a personal health record?
A personal health record, or PHR, is a tool that lets you enter, manage, and track your own medical information. The National Cancer Institute describes it as similar to the electronic medical record your doctor keeps, with one difference that matters: you keep the PHR, and you control who sees it.
Some health care providers, insurance companies, and employers offer one. Free-standing apps exist too.
What is worth putting in it
NCI's list of what to track during cancer treatment is specific, and it is the same list whether you use software or a folder:
- dates of each medical visit
- tests and procedures, with dates and results
- treatments received, with dates
- side effects and symptoms, with dates
- every medicine prescribed
- other supportive or complementary care
Add the names and contact details of everyone on your care team. Keep copies of treatment plans and results, either in a file folder or photographed and saved.
The reason to start early is not tidiness. Cancer care usually crosses several practices and hospitals, and no single electronic record follows you across all of them. The version you assemble is often the only complete one.
You have a legal right to the underlying records
A PHR is only as good as what you can get into it, and federal law is on your side here. Under 45 CFR 164.524, the HIPAA right of access, you can ask to inspect or get a copy of your health information from a provider or health plan.
The details are worth knowing:
- They must act on your request within 30 days. They may take one extension of up to 30 more days, but only with a written explanation and a date.
- If the records are electronic and you ask for an electronic copy, they must give it to you in the form and format you asked for when that is readily producible.
- They may charge only a reasonable, cost-based fee, limited to labor for copying, supplies, postage if you asked for mailing, and preparing a summary if you agreed to one. A per-page search or retrieval charge is not on that list.
- You can direct a copy to someone else, in writing.
If a request stalls, quoting the 30-day rule in writing usually moves it.
Low-tech works too
A PHR is one option among several, and NCI lists the alternatives without ranking them. A notebook or journal captures side effects and questions between visits. A calendar or planner used only for medical dates keeps appointments from scattering. Apps can do the same job.
NCI also suggests asking whether you may record conversations with your doctor on a phone or recorder. That does two things: it gives you the details later, and it frees you to listen instead of writing during the visit. Ask first, since policies differ by practice.
The system that works is the one you will actually keep up. A shoebox of printed results that is current beats an elegant app you abandoned in week three. If the paperwork is getting away from you, a hospital social worker can help you set something up. Our guide to keeping track of your medical records has a starter structure, and the piece on questions at your first oncology visit covers what to write down from the start.
Sources
Want the full picture? Read our complete explanation: Keeping Track of Your Cancer Medical Records
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