 Live from San Francisco, it's theCUBE, covering Red Hat Summit 2016, brought to you by Red Hat. Here's your host, Stu Miniman. Welcome back here at Red Hat Summit 2016. We're in the lobby of Moscone West. And at Red Hat, of course, we always get lots of stories about open source and the impact it's having. So I'm happy to have a special panel here actually that are going to be launching a video later this afternoon, which you can watch here on theCUBE, or if you're out the show, it's going to be on the third floor. So let me walk through the guests that we have here. Sitting next to me is Liz Salome, who's a brain cancer blogger. Liz, thanks for joining us. Thank you. All right, we have Dr. John Santa, who's the director of open notes dissemination at Beth Israel Deaconess. And we also have Amy Fellows, who's an associate of community health programs, also with open notes at Beth Israel Deaconess. Liz, let's start with you. We actually, your story was told in the keynote. Give her audience just brief, a little bit about your background and what brought you into this. Sure, so my professional background is I'm a digital communicator. I make websites, I design graphics. And one week after my 29th birthday, I had a big seizure. Rush to the hospital and found out I had a mass of my brain. Lo and behold, it was growing. We found out I had brain cancer. I had a brain surgery. I went through chemotherapy. And throughout that time, I was looking for survivor stories on the internet. You look up your diagnosis, you Google brain cancer, you see horrible facts out there. And so, as somebody with a digital communications background, I thought, you know what, I'm just going to go open with my story and be the person I was looking for online to say, hey, I'm a survivor, I'm still alive. And this is what brain surgery is like. And this is what chemotherapy is like, hoping that maybe perhaps other folks might get some value out of the information I had to share. All right, well, thank you so much for sharing. Dr. Santa, why don't you tell our audience, you know, what is this open notes, you know, initiative that you have? Yeah, open notes is a movement. It's a movement to try and bring openness to the health system, which is a challenging thing to do because as Jim Whitehurst said, hierarchies squelch innovation. And I'm sad to say that in healthcare, we have many hierarchies, many of which involve physicians that have to be convinced to innovate. And so my job in open notes is focused on trying to convince predominantly physicians and other clinicians, it's time to open up your notes. What you're saying in writing makes a big difference when patients read it. 99% of patients like Liz want to see their notes. All right, Amy, can you tell us a little bit about the open patient story and how Beth Israel Deaconess got involved? Sure, so in 2011, Beth Israel Deaconess did a research study involving three systems, Beth Israel and Boston, Geisinger in the Midwest and Harborview in inner city Seattle. And so basically they found the data that Dr. Santa referred to that they had 100 primary care providers open up their notes to patients for a year and that 99% of the patients wanted to have continued access. They felt more engaged in their care. They were better able to take their medications, providers, even after offered to stop having their notes open after the study chose to keep their notes open. And since then it's become a movement that has spread across the country with now estimated more than seven million patients having access to their notes across the country. Well, that's great. Dr. Santa, I have to believe it's gotta be tough for some doctors. I mean doctors, you know, they go through all their training, they are the experts on what they're doing. Tell us some of the conversations you're having. You know, is it a hard sell to get them involved in something like this? Well, it varies. I mean, Amy mentioned, we're very proud seven million people have access to their notes, so only 340 million to go. So in many communities there are early adopters, innovators who this is what they do and they gravitate to it. But what we're finding is there are many more folks who see the power of it, but they feel the power of those hierarchies that they work in. And it's a stressful environment for some doctors out there. Electronic records have been stressful for them and they're fearful. And so a lot of our work is focused on trying to overcome those fears. And to, as again, Jim Whitehurst said this morning, it involves them giving up control, which is not to our doctor nature. We wanna be in control. You know, it's hard to work with health issues that can be very hard to control and then when you get people issues that take some of that control away. So doctors are fearful and we're working hard to overcome that. Yeah, so Liz, give us the patient a side of things here. I mean, with healthcare people are worried about security, they're worried about oversharing, certain things, obviously you've got a great story, but there's gotta be a little bit of fear for some people too, getting involved in something like this. Yeah, so for patients, not every patient is gonna wanna approach their healthcare story the same way I do. And not every patient wants to read every single note their doctor might write about them after an appointment, but some do. And no one has ever died from a Google search, but the paradigm is changing away around people are consuming healthcare. If we are interested in a new diet or the new Fitbit technology, we're gonna look up reviews from other people who are engaging with that product. Same is going on with healthcare. And the future is that we see ourselves at the same level as our providers, we wanna be participants in our care. And what's so great about OpenNotes is after you have that visit with your provider, you actually can go and remember what they said. Not everybody brings a notebook into the doctor's office and writes down the exact conversation. So to be able to go back and read your provider's recommendations actually keeps patients on track with 99% of patients, didn't you say? Not only do they like to read what the notes are, but they're more likely to do what the doctor is recommending and take the medication in the right way and take the advice that their provider has given to them. And so this is just the future where any industry is going and healthcare just needs to keep up with that. Yeah, I have to think even just alone, digitizing it, you don't have to worry about the handwriting or kind of the chain of information being sharing. Anything you can share about additional benefits that the participants from the healthcare side have gotten from participating in the OpenNotes? There's a quality and safety issue because who knows better what's happening with the patient than the patient themselves. So there are errors that can be found when the patient has access to their own information. And really this is giving the patient access to their own information, it's not a security issue in terms of giving it to anyone but themselves. So they're able to review that and catch any errors that might have been... And I just want to add on to that. That is so important that the patient can see their own notes and their own medical record. The errors thing is a big deal. I have a relationship with many other patients and they find errors such as in the medical record I would say your friend of mine found that her husband's name was actually written down as her father's name. So who can make medical decisions when they might lose capacity? Certain allergies to medications aren't recorded that should be recorded and that could be a big, no disaster in case of an emergency. Okay, can you speak to just the adoption and how you get more people into this program? Well, we're working with multiple software vendors and developers who are essentially building these electronic medical record tools and so they have to be willing to support open notes and many of them but not all by any means have done so. So the enthusiasm of those software folks to support open notes is important. Then we have to get the doctors to agree to do this. One key issue is that they think they're gonna end up having to work more, that they'll get overwhelmed with emails and actually that's not the case. In fact, we think there may be less emails. A second is they're worried, well they're gonna see these errors and they're not gonna love me. That's not true. Actually, we think that when patients are given this kind of information, they trust their doctors more. The relationship grows even if there are errors because they say to themselves, this is great. My doctor's trying his or her best to have the best information and what doctor would want to have incorrect information about a patient? So it all works out. We've done multiple implementations now across the country for those seven million folks. It all works out and it works out well, but getting people to trust that it will is hard work. Yeah, I mean, Liz, that trust factor has to be something that is pretty important. So any other commentary you wanna share on how open notes helps patients? Wow, when you're diagnosed with something serious or a chronic condition as a patient, you're already looking to your clinician as the expert and you don't know what you can do. And so you say, tell me what I need to do. And then we go back in secret on our own and Google stuff and look things up on the internet and then we bring things back to our provider and say, hey, I just heard of this thing or, and we all do it because we're all patients. So with something like open notes, it allows that conversation to happen outside. We can continue having a conversation where you can remember what the provider said and it's not like you can only have these conversations with them at the clinic or at in the actual hospital. You can remember what they said and you might be able to go back to them and give them, start that two-way conversation about what it is that you're learning. And to what you said about clinicians who are might opt into an open source thing being concerned they're gonna get too many emails or communicated with too much. Just knowing your provider is there is just a helpful reassuring thing in general for patients. Yeah. One important element is about a third of patients want a caregiver to have access to their notes. I just navigated a seven month illness with my 95 year old father. He died at the end of it. But seeing the doctor's notes, because many times when dad would see the doctor, he would come back to, so what'd he say? He'd say, everything's okay. Well, I knew everything was not okay. And fortunately, his doctor was very willing to get those notes to me. It made a huge difference. Okay, great. If people wanna find out more information on the initiative, what are some of the resources they could go to? Is there a big website for it or? They can go to opennotes.org and find out more information. There's a lot of videos from various perspectives, both the doctor and patients. And you know, it would be great if they see any mention of open notes in the health system that they're in, start asking for their notes. So for example, here in the Bay Area, Stanford and the Sutter health systems have implemented open notes and Kaiser and Adventist systems are thinking about it. Patients in those systems need to ask about open notes. Where I come from in Oregon, almost all the major systems are doing open notes. But in some cases, the patients have to ask, how do they see their notes? They need to register for them in the patient portals. A lot of patients aren't registering in the portals where all this wonderful information is. So there's a lot that individuals need to do. And as far as patients who are telling their story online, my brain cancer blog is TheLizArmy.com, but I'm not the only person who's writing about living with cancer or living with a long-term illness. There are many others and there are amazing Twitter communities for patients where they can connect with providers and talk about different commissions. And I would definitely look up the healthcare hashtag project where they chronicle and outline all of the different hashtag communities for people with breast cancer, lung cancer, you name it. And it's an easy way to kind of get in there. So you get diagnosed with anything in the future. You can actually find a support community that's knowledgeable, that's connecting and seeing patients as partners in their own healthcare. Well, we definitely love to see the technologies in the communities. Communities are always helpful, but social media and hashtags help them to solve important issues, look in patient bill of rights way of changing. So thank you all three for joining us on this segment. We'll be back with lots more coverage here from Red Hat Summit. You're watching theCUBE.