Patients are Ready to View Their Health Information — And Regulations are Catching Up

About the Author: “e-Patient Dave” deBronkart is PocketHealth’s Chief Patient Officer. A survivor of a near-fatal cancer by being highly engaged in his care, he’s now a global evangelist for patient engagement in health data as a path to better achieving healthcare’s potential

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On April 5 in the US a new regulation takes effect. Called the Cures Act Final Rule, it mandates that patients must have online access to important parts of their medical record. For free. 

Similarly, in Canada, the Province of Ontario’s Personal Health Information Protection Act (PHIPA) now provides individuals with a right to access a record of personal health information in a digital format (though not necessarily online). 

Both rules include access to visit notes – the notes our clinicians write about their encounters with us. These notes are “text cousins” to what PocketHealth does with images – they’re your health information, which belongs in your hands – so we pay close attention to related research. And this summer we got new evidence supporting our belief that patient access is viable, good, and patient centered:

In a big new study in the prestigious Journal of General Internal Medicine, 96% of 21,000 patients said they understood their doctors’ notes, and found them valuable – despite the skepticism we often hear.

The paper is the latest in the nearly 100 studies about OpenNotes, a social movement in which clinicians let patients read and download the clinician’s actual visit notes. The study confirmed what activists have said for years: given the chance, patients are anything but passive.

• In this study, 96% understood “all or nearly all” of the note.
• Of the 4% who didn’t understand, most took action (sought help in understanding them).
• Patients don’t like it when the doctor’s note is incomprehensible: such patients were much less likely to recommend that doctor!
• Of those who did understand the note, 6% spotted something important that was missing. Yes, 1 in 16 found that the record was incomplete: something important had been left out. 

See the OpenNotes summary of the study for a distillation of the paper, or read the original paper itself. 

For us the message couldn’t be clearer: the time has come to make access as simple as possible.

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It’s a good thing we’re doing here at PocketHealth. It’s not easy – nobody’s ever done it before – but it sure matters. Get on board, and spread the word.