OpenNotes Fuels Discussion on Demand for Personalized Health Information

Earlier in the week we announced the launch of OpenNotes, a 12-month study that will evaluate the impact on both patients and physicians of sharing with patients, through online medical record portals, the observations made by physicians in their notes after each patient encounter. Over the last few days, we’ve been noticing some buzz around the announcement, primarily from the health blogger community. It’s great to see such strong support for this study, which ultimately aims to empower patients while delivering some much-needed transparency into the world of health care. Susan Frampton from Planetree summed-up the demand for OpenNotes perfectly in a post from HealthLeaders' John Commins:

Frampton says a growing number of patients—particularly baby boomers—want to be informed about the care their getting." They want to know what is in there, they want to know what the plan is and they want to know what the results are," she says. "People who don't want to see their charts just elect not to look at it if it is presented to them, and that choice needs to be presented."

Today we were thrilled to see Newsweek’s Claudia Kalb echoing those same thoughts, tying OpenNotes into her article on the growing curiosity and interest in personalized genomics:

The idea of knowing your personal genome is still pretty futuristic, but the complaints and symptoms and worries we share with our primary-care docs and the observations they make about us matter right now. And they could have a direct impact on our health habits immediately. Delbanco is passionate about getting physicians and patients to exchange this information and to collaborate: “My view of medicine is that we have a unique body of knowledge that unless you’re a doctor you don’t have. And you have a unique body of knowledge about yourself that I will never have. Our job is to get the two together as close as possible.” Which certainly seems like a simple and enlightened proposition.

As shown in those two quotes above, the concept behind OpenNotes is rooted in the growing movement for increased patient access to highly personalized medical data and information. This demand is controversial among many in health care: as Steve Downs has noted, there are many people with a patient advocacy perspective who think this is so obvious a right and there should be no question about it.  And there are many physicians who think – for very plausible reasons – that this is a terrible idea.  However, as Tom Delbanco mentions, these two approaches to health care need not be mutually exclusive. Combining the medical expertise of doctors with the “self” expertise of the patient can result in better care – and we look forward to seeing if OpenNotes can bring the two together.