Organizing a parent's medical information

What a hospital actually asks for

Emergency departments ask a short and predictable set of questions, and they ask them of whoever is standing there. What is he taking. What is she allergic to. Has he had surgery. Who is her cardiologist. Does he have a directive. The answers are not hard to assemble; they are hard to assemble at speed, from memory, at night.

So the work is not building a medical archive. It is holding a small amount of information in a form that arrives when your parent does. Everything else — the imaging, the discharge summaries, the specialist letters — can be requested later, and this page explains how.

The single highest-value item is the medication list, and the reason is that it is the only one nobody else has. A hospital can look up a diagnosis in its own system. It cannot know what a different doctor prescribed last month, or what your parent quietly stopped taking.

The records are a right, not a favor

Families ask for records politely and get treated as a nuisance, because nothing at the desk says there is a rule. There is. The federal privacy rule that people know as the thing stopping them being told anything is also the thing that entitles them to the file.^{Source 3}

The right belongs to the patient. It reaches you when you hold authority to make health care decisions for them: a covered entity must treat a personal representative as the individual, and who qualifies is decided by state law rather than by the regulation, which in practice means the health care power of attorney or health care proxy your parent signed. The scope of the authority is the scope of that document.^{Source 3}

This is the practical reason the health care agency document matters more than its name suggests. Without it you are asking for a favor and a receptionist may refuse. With it you are the patient for this purpose, and a refusal is a compliance problem rather than a decision.

It is a different document from a HIPAA authorization, and the two do different jobs. An authorization is permission to disclose, usually narrow and often expiring. Health care agency makes you the person the rule is about.

Thirty days, and a closed list of charges

A provider must act on the request within 30 days of receiving it. It may take one further 30 days, and only by writing to you before that first window is up to say why it is late and when it will be done. There is no second extension.^{Source 1}

That makes silence legible. A request that has simply gone quiet past 30 days, with no written extension, is out of time — not still in progress. It is worth putting the date of the request in writing for exactly this reason.^{Source 1}

The fee is capped by what it may consist of rather than by an amount: copying labor, the supplies for a paper copy or portable media, postage if you asked for it to be posted, and preparing a summary if you agreed to one. Searching for the file and retrieving it are not on that list, so a charge for locating a record has no basis in the rule.^{Source 2}

Ask for an electronic copy where the record is held electronically. It removes the copying and postage costs the fee is built from, and it is the format that is actually useful to the next doctor.

Where it has to live to be worth anything

Two copies in two forms. One that travels with your parent — a card in the wallet, a note on the phone's lock screen, the phone's own medical ID — and one that a second person can reach without your parent's phone, because the emergency where this matters most is the one where they cannot unlock it.

Date the summary. An undated medication list is treated as unreliable by anyone reading it, and rightly: the value is entirely in whether it is current.

Do not make a safe-deposit box the only location. It is the one place nobody can open in the hours when this information is needed.