Why Access To Your Own Records Shouldn’t Be A Fight

The following is a guest article by James Bateman, Co-Founder and CEO at Marble

The idea for my company started with my father-in-law’s cancer treatment. My mother-in-law was the one who bore the burden of it: gathering his medical records from disparate sources, office by office, so his doctors had a full picture of his history. It’s the reason I’ve spent my career building infrastructure for patient-directed health data instead of doing something else with a physics degree.

The 21st Century Cures Act became law in 2016 and set the framework for patients’ right to their digital records, and by no accident the same year I founded Marble. For the 20 years before that, HIPAA had already given patients the right to access their own records, but the loopholes in it kept fax and paper record-sharing alive, feeding an industry of paper medical record release companies. That persisted even as electronic health records became standard across the market. On paper, individual access to health information has been settled for years. In practice, most patients still hit the same wall my mother-in-law did: a fax machine, a per-page fee, a 30-to-60-day wait, multiplied by every provider they’ve ever seen, mixed in with a pile of patient-portal logins that each export a small, unreliable fragment of the record to share over Dropbox.

None of this is a data problem anymore. Nearly every hospital and 91% of office-based physicians now keep patient records in a certified electronic health record. What’s missing is a path that lets the patient authorize one query that reaches all of those records at once, instead of one signed form per provider.

That path now exists under TEFCA, the federal framework for nationwide health data exchange. Individual Access Services (IAS) let a patient verify their identity once and authorize a query that reaches connected networks simultaneously. What comes back traces to the provider that generated it, because it was created for billing and treatment, not for whoever eventually requested it. I’ve spent the last several years building this at Marble, and working with the Sequoia Project on the policy side.

The wall my mother-in-law hit shows up everywhere a person needs their own history fast, and it changes shape depending on who’s asking. A patient switching doctors mid-treatment loses continuity of care while records catch up by mail. Someone appealing an insurance denial is racing a clock the insurer doesn’t have to watch. A disability applicant has to prove years of history to an agency that won’t wait for a fax queue. A life insurance underwriter asks for records the applicant can’t produce fast enough, so the policy gets priced on incomplete information instead of real history. A hospital system merging with another inherits patients whose full record is still scattered across the system it just acquired. A researcher running a clinical trial has to recruit around the fact that most candidates’ relevant history sits in three different EMRs that don’t talk to each other. An employer running a self-insured health plan pays claims twice because nobody could confirm a patient’s prior treatment in time. A veteran moving between VA care and a private specialist becomes the only link between two systems that were never built to share.

Each of those is usually described as its own problem, with its own vendor and its own workaround. They’re the same problem. The record exists, it’s digital, and the only thing standing between the patient and their own history is a chain of one-off requests that assumes nobody’s in a hurry.

IAS doesn’t create a record, and it doesn’t grade one. If a network comes back empty, that’s not a judgment on anyone’s history. It just means that network doesn’t have the file. What IAS does is collapse the chain: one authorization, one query, and everything a patient has already generated comes back attached to the provider that made it.

Insurers, underwriters, and health systems solved this access problem for themselves years ago, through data relationships most patients never see. The patient, whose records these actually are, shouldn’t be the last one to get fast access to them. That infrastructure exists now. The only question left is who’s still using the fax machine.

About James Bateman

James Bateman is a health-tech entrepreneur and the Co-Founder and CEO at Marble, the company behind Medchart and SettLiT. Marble’s businesses work with health data and legal settlements, helping patients and claimants access their medical records and move through the claims process. James is a contributor to the privacy and consent working group at the Sequoia Project and a member of the privacy roundtable.