Getting a copy of your own medical records is supposed to be easy and inexpensive. It also can be essential for ensuring the best medical care. But many hospitals and doctors have made it difficult and pricey, and the federal government is now doing something to help patients.

Anyone with any kind of serious medical condition really needs to read their own records. I made this Step One of the advice in my book, The Life You Save: Nine Steps to Getting the Best Medical Care, and Avoiding the Worst. Reading your own records makes you an informed patient, helps doctors correct misunderstandings about your history, and ensures that you don’t get expensive duplicative tests because one provider doesn’t know the results of what another provider’s testing.

But many hospitals make access expensive. They charge patients per-page fees — in the DC area, typically in the 50-75-cents-per-page range — that add up quickly when a patient has any kind of complex or lengthy hospital stay with hundreds or thousands of pages of records.

I put together a team of lawyers to bring a consumer class action lawsuit against two big DC hospitals: Medstar Georgetown University Hospital, and George Washington University Hospital.  The hospitals are throwing lots of lawyers and lots of paper at us to try to defeat our case, which relies heavily on federal health care privacy law, HIPAA, that is supposed to ease access to records – especially when those records are in electronic format.

Which brings us to the new guidelines published this month by the Department of Health and Human Services. The guidance makes it clear that everyone has a right to see their own records, and within 30 days of sending a written request to the hospital or doctor. And here is what the guidance says about fees (using bureaucratic-speak of PHI, for Protected Health Information, aka your medical records):

The Privacy Rule permits a covered entity to impose a reasonable, cost-based fee if the individual requests a copy of the PHI (or agrees to receive a summary or explanation of the information).  The fee may include only the cost of: (1) labor for copying the PHI requested by the individual, whether in paper or electronic form; (2) supplies for creating the paper copy or electronic media (e.g., CD or USB drive) if the individual requests that the electronic copy be provided on portable media; (3) postage, when the individual requests that the copy, or the summary or explanation, be mailed; and (4) preparation of an explanation or summary of the PHI, if agreed to by the individual.  See 45 CFR 164.524(c)(4).  The fee may not include costs associated with verification; documentation; searching for and retrieving the PHI; maintaining systems; recouping capital for data access, storage, or infrastructure; or other costs not listed above even if such costs are authorized by State law.

That last bit is interesting, because the state of Maryland has a law authorizing fees of up to 76 cents a page, and the hospitals are saying that is proof that their charges are reasonable. Not so fast, we say, because Maryland law is a relic of the old days when records existed mainly in paper format, when it might make some sense to charge by the page for producing records. But charging by the page makes little sense in the electronic era, when it takes the same amount of time to produce a record whether it is a few electronic “pages” or thousands.

Here is a useful summary on our website of your rights to obtain your own medical records, and how to advocate for more reasonable fees.

The New York Times has a good story about this important subject, which talks about other ways that hospitals and doctors make it harder for patients to get their records.  Here’s what one mother, Megan O’Boyle of Arlington, Virginia — told the Times about why it was important in her quest for better care for her autistic teenaged daughter:

It burns me up that I had to jump through hoops to get her records. It’s empowering when you get all this information. You can be a much better advocate for the patient. More information is better. It means better services for my daughter. Why should I have to pay 25 cents to 50 cents a page for what really belongs to me in the first place?

Amen to that!