(NOTE: This post first appeared at GritDaily, a brand-new media site I just learned about prior to SXSW, where I am now – magically – a contributor. Shout-out to my buddy Will.)

Did someone say they party at SXSW? ©NomadSound

People go to South By Southwest for all kinds of reasons.

Nonstop parties would be one. Call me crazy, but I went for the conference sessions in the healthcare track. (Okay, a few parties, too.) I wanted to learn about disruptions and innovations in the biggest monster market of ‘em all – at $8 trillion and counting. Knowing there was so much startup action in the healthcare and medtech sectors, I was anxious to learn more about the trends and issues driving all the excitement and change — really gnarly, difficult change — in this space.

One panel I landed in over the weekend taught me about something being touted as a “real sea change” in consumer healthcare.

Turns Out Your Doc Has Been Talking Behind Your Back

But I guess we knew that from watching this Seinfeld episode.

Seriously, physicians have to continuously write notes into your medical record as part of your normal healthcare. They have to fully document your symptoms, diagnoses, treatments, drugs prescribed, etc, etc, in great detail. They don’t just do it for your benefit – it’s a legal requirement. It’s all entered digitally now into your Electronic Health Record (EHR). But did you know that, until recently, patients didn’t get to see those notes? That was the basis for a panel at SXSW called “Transparency in Healthcare” — which was all about a movement that’s blowing up that old notion of, well, it’s-none-of-your-business.

It’s called Open Notes, and what it’s doing (quite successfully, I learned) is getting institutions. to allow you, the patient, to see those doctor notes whenever you want. That may not sound radical to you — maybe just common sense? But change tends to come s-l-o-w-l-y in the healthcare industry.

Why would this matter to you if you’re a healthy person — just, say, getting an occasional physical, or going in for a sore throat? Not much maybe. But if you have a chronic health condition, requiring you to see a physician – or physicians – frequently, it matters a lot. And one of the panelists, a former punk rock drummer, had that kind of story to tell as a malignant brain tumor survivor.

Consumer In Charge

“Healthcare has been physician-oriented for too long,” said Trevor Price, a VC on a panel I caught the previous day. “It lacks consumer focus, which is crazy,” said Lynne Chou O’Keefe of Kleiner Perkins, another on that same panel. So, I was ready now to hear what these Open Notes folks had to say about how “transparency” in healthcare is playing into that trend.

On this panel were Cait DesRoches, executive director of OpenNotes (she’s also an associate professor at Harvard Medical School), and Liz Salmi, a strategist with Open Notes and a former cancer patient. (The punk rocker referred to above, who actually once performed at SXSW when she was 19.) They were joined by Rasu Shrestha, a radiologist and big supporter of this new movement, who’s also chief strategy officer of Atrium Health. The excellent moderator was Bryan Vartabedian, a physician at Texas Medical Center, and also a writer and podcaster.

“It’s not software, we’re not a vendor — rather an international movement, funded by philanthropy,” said DesRoches of OpenNotes. “That way, we’re free from conflict of interest.”

Just how consumer focused is healthcare becoming? “We go see ‘Dr. Google’ first, before we see our own doc,” said Shrestha. Up to 7% of all Google searches are healthcare related, according to panelist Liz Salmi – more than 70,000 per minute.

“I’ve never seen anything like this (the reaction to Open Notes),” she said. “People want this!” Some 200 organizations in 20 states have already signed on to the Open Notes program.

But Are the Docs Buying In?

Okay — but how have doctors reacted? “When I first heard about this, I was freaked out,” said the moderator (a physician). “It’s a real culture change,” said radiologist Shrestha. “Initially, the thought was, we’re all gonna get sued more!” He also heard doctors saying, “We don’t have time for this.” Which caused him to think to himself, “What, you don’t have time for your patients?” But he’s since seen the “embrace from the physician community going way up” in his work at Atrium Health in North Carolina.

“Patients do now have a legal right to their records in the U.S.,” said Open Notes’ DesRoches. Still, most healthcare organizations “don’t make it easy.” With increasing adoption of Open Notes, it is getting easier, she said. “But culture change has to come with it.” Training of clinicians and nurses must play a big role.

Has there been a change in doctor behavior because of Open Notes, where it’s been adopted?

At first, DesRoches said, they tend to think they’ll get buried in calls and emails after patients are able to read their notes. “But for every one that does call, we find two that didn’t because they now better understand their instructions.”

Do doctors have to change the language they use in notes, because they know patients are now reading them? “We think of this as a backdoor to empathy that can only lead to better healthcare,” said DesRoches.

“We now have an opportunity to turn the EHR into a living, breathing, realtime document,” said panelist Shrestha. At Beth Israel Deaconess Medical Center, Open Notes’ DesRoches said they’re even starting to have patients write a short note about what’s happened since their last visit, and actually make that a part of their own medical record.

Shrestha, the radiologist and strategy officer at Atrium Health, said it’s now possible to leverage voice and AI technology “to have conversations with our patients that can go into the legal document – a co-created record.”

Then he stood up, tore open his blazer, and revealed a “Fight Burnout” t-shirt. “Doctor burnout is a huge problem today – read the studies,” he said. Because of the increased time physicians have to spend at the keyboard, entering so much data into the EHR, “docs now have their backs to the patient 44% of the time. That’s not why I went to med school!”

The clear message? If Open Notes can help alleviate that pressure, via the promise of that “co-created record,” it can only help lessen the burnout problem. Do you want a doctor who’s so stressed out, he or she can’t focus on you?

Of Open Notes, Shrestha said, “We’re seeing transformation before our eyes. We’ve cracked open (the EHR) to let the sunlight in.” Open Notes exec director DesRoches added, “Change is here – we’re not going backward.”

Yep, that’s an advancement in healthcare worth partying about.

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Update 3/18/19:

You can’t read this post and not read this (just published):
Death by a Thousand Clicks: Where Electronic Health Records Went Wrong | Fortune
Some serious investigative journalism here. Long read, but definitely worth it.