Editor's Corner: Patient access to records far from reality

Marla Hirsch

The current brouhaha about the release of the presidential candidates’ medical records has inadvertently shed light on an important issue: the ability of patients to assemble a complete set of their medical data.

Two recent reports highlight the problem.

One is the Office of the National Coordinator for Health IT's latest data brief announcing that there has been a “dramatic” and “significant” increase in the number of hospitals offering patients access to their electronic medical records. The brief reports that the rate of U.S. nonfederal acute care hospitals that enable a patient to view his or her records jumped from 24 percent in 2012 to 95 percent in 2015. The percentage of hospitals that enable patients to not only view, but also download and transmit records grew almost seven-fold between 2013 and 2015, from 10 percent to 69 percent.

The number and variety of other patient engagement functionalities also continued to rise, according to the data brief.  For example, the percentage of patients who could submit patient-generated data increased from 13 percent in 2013 to 37 percent in 2015. The percentage who could pay their bills electronically rose from 55 percent in 2013 to 74 percent in 2015.

In a related blog post, ONC officials remarked that these increases were part of a greater effort to enable the rights of people to obtain and use their medical information, and said that they are working to “keep the momentum going when it comes to patient access to health information where and when it is needed most.”

The data brief appears to be good news. Moreover, it dovetails with ONC’s and the Office for Civil Rightsinitiative to inform patients that they’re entitled to their medical records.

However, the ONC brief only reports on what access hospitals are offering to patients. We still don’t know whether patients are taking advantage of this access and actually obtaining their records. If they are, how are they using them? Is it helping? We have no idea.

To underscore this problem, we need look no farther than the recent New York Times article which points out that even with such access, it’s virtually impossible for the presidential candidates, let alone anyone else, to obtain a full, single set of medical records in one file, going so far as calling it a “fiction.” Many records no longer exist or can’t be located, and most are still in paper form. They’re being held by dozens of unaffiliated providers and across state lines.

And even if an individual asks for his records, and actually receives them from providers, the data is often provided in different ways--paper, flash drives, CDs, etc.--making it hard to consolidate. What's more, they’re hard to read, with obscure references to lab results, sloppy physician handwriting and the like.

It can be argued that some information--such as the exact date that you broke your arm back in 1982--is not needed. But if patients did have their full records, it would be more likely for the patient, for a doctor reviewing the record, to discern a pattern, catch an early warning sign of a condition, identify an error or see a long-forgotten clue to a current diagnostic mystery.

Isn’t that the purpose of getting and using the data?

How can this problem be resolved? Require a designated primary care physician to be the repository of patients’ records? So many people these days don’t even have a primary care physician. Require participation in health information exchanges? They don’t have all of the records. Require or encourage patient use of personal health records? That won’t work well if patients can’t get their data.

Patient engagement is a great buzzword. But it’s hard to engage the patient with so many holes in the file. It’s not our current reality. - Marla (@MarlaHirsch and @FierceHealthIT)