Nobel Conference 60 - Session 2 Panel Discussion and Audience Q&A

[0:00] I'm sorry, I missed the question. Was there a question? If there are questions from the panel directly for Dr. Brown about her talk. I have a question. The database that you talked about with all the sleep data, are there any other materials collected from those subjects, blood or something that would allow us to do like DNA sequencing? So that's a great question actually, and I actually didn't get that much into BDC, the Biodata Catalyst, but for the NSRR, for the Sleep Data Repository, it's primarily human sleep data, even though it's just been renewed and they're not only, they're going to collect, start collecting model organism sleep data, circadian rhythm data in both human and model organisms. They've actually piloted circadian data, Beth Clurman was the the first person to be able to put her data there. But as far as collecting, they do collect different types of metadata, but as far as biological samples, the NSRR won't. But what

[1:02] it will do is link to the NHLBI repository, BioLink, that does have biological samples. And so for people who are doing sleep studies and they are collecting those samples, they can put it in BioLink and that data can actually be linked. So genetic data and genomics data can be linked through BDC or BioData Catalyst. And so we are thinking about ways to have these linkages to enrich the sleep data. I see. Okay. So it may be possible then to get the – there's a little bit of trouble hearing across the panel, but – I'm staying.

[1:40] Yeah. Okay. Thanks. So we're working on it. Well, I'm going to try and do three questions in one. So this is kind of melding parts of three different questions. But in what areas is sleep study most urgently needed? And kind of related to that, you mentioned the idea in the Hopkins study of just painting the roofs white to reduce the heat island effect. Are there low-hanging fruits that could be easily adopted as kind of public policy outcomes?

[2:11] And then the third part, is there anything we can do that will take the best research results and put them into standards of care more rapidly? Or how long does that, is there anything that can speed up the process for these areas where we're pretty confident in the results? Those are all great questions. And so I'll start with low-hanging fruit. Me personally, I do think that circadian medicine is low-hanging fruit. I think the research is there and I think the research is strong and in some cases we already do it right so for some who take antihypertensives you may go to your pharmacist and on the bottle of state may say take it at night that's a reason right because when I spoke earlier about your blood pressure spiking the first thing in the morning if you're taking that medication at night it's going to prevent that spike and so for some things there are there is movement in the space, but it hasn't reached the larger medical vernacular, right? So I

[3:16] personally think that chronomedicine is low-hanging fruit. As far as things that can be done, we're working on dissemination and implementation. So dissemination and implementation research itself is an entire area of study, but we're interested in it because there are essentially therapies that are working but they not getting to the people that they need to get to right Particularly when you think about we talking about sleep apnea right I'll use that because we're the largest funders.

[3:53] When we talk about our disorders, it's just easier to have that conversation. But there are estimates that around the world, there are about a billion people with sleep apnea. In the U.S., it's ranging anywhere from 20 to 30 million. but they think that those estimates might be higher, particularly in socioeconomically disadvantaged populations and rural populations where they're not being diagnosed or not being treated. And so awareness of sleep, not only of sleep disorders, but sleep in general, is also something that is probably low-hanging fruit that would be able to have people start thinking about their sleep and things that they can personally do.

[4:38] Something that's been going on for the last several years, and I believe at lunch we were having a conversation about it, was the school start times. And there are a lot of school systems that have changed, but that was a grassroots effort. There was parents that were coming that were saying, you know, our kids are being disadvantaged in a way because of the school start time. And now I'm not on either side or the other, but what I will talk about is the biology, particularly of adolescents, when we were having a conversation earlier about circadian rhythms, when you have someone who's an adolescent, they have something called delayed circadian phase.

[5:19] And so for, and Mary can speak much more better than I can, because she is the actual expert in this space, where you're having adolescents where, yes, you can't get your 15-year-old to bed at 8 o'clock because their biology is saying that they need to be up. And when you're trying to get them up at 6 o'clock, their biology is also telling them, it's nighttime, I can't be up. But for society, they need to be on that bus or in that car headed on to school when they're asleep because of their biology.

[5:53] And so I do think that there are things that, you know, can be done. I think there are things that are right for that. But I think that, you know, others on this panel, particularly, you know, Mary could speak to some of those things as well. Would you like to speak to those, Mary? I'm going to speak tomorrow about a lot of that stuff. I have. I didn't mean to free up anything you were saying. There's another pretty controversial issue that's being talked about now.

[6:25] And in Congress, it's called the Sunshine Act, which was supported by a senator from Florida and also the senator from Rhode Island, Senator Whitehouse. And they're, don't do it. Because the Sunshine Act wants us to stay on daylight saving time all the time. the circadian biologists and the health people who are interested in the health of all of us want us to go and stay on standard time all the time so there's now this public health you and cry and you know the good guys in the no no the two sides of the issue are really you know duking this out and at the end of the day. I mean, you know, this morning I happened to wake up early because I wanted to go to the gym and I looked at my watch and said sun up yet No the sun doesn rise till 715 these days in this place And that just and by the time we go off daylight saving time

[7:35] a month from now it's sunrise is going to be close to eight o'clock i guess you all are used to that but for me you know and a lot of times with the school start time well we don't want the kids out waiting for the bus before while it's still dark well guess what if we're on daylight saving time it's still dark at a decline we stay on daylight saving time through the winter so i understand florida lobbying for the sunshine app but rhode island minnesota not so much yeah i just had one low-hanging fruit from the medical point of view and that is the emergency room the emergency room is noise it's light it's interruptions and we know the most important after brain injury is that you actually sleep and that is something that could be done fairly quickly and so i went to the american

[8:36] academy of neurology meeting it was actually a big thing for them to discuss and i was like have you you not listen to NIH, like they didn't know all these neurologists actually treating us, but it's constant awakening. And many, many times for reasons that's not needed for that patient. Yeah. And we are supporting quite a bit of research for sleep in the ICU now, because anyone who's been either in the ICU or in the hospital, you know that around the clock, someone is in there and there's a lot of lights and bells and whistles and probing and prodding, which is not conducive to sleep at all. And so we are supporting research in that space.

[9:21] But again, it comes back to the panel and conversation we had earlier. The economics is one, but also the culture of how hospitals work. And so that is certainly low-hanging fruit. and we have people who are investigating that space. But that will probably be a hard thing to change. I'll just comment that a couple of years ago, my wife was in the ICU at Beth Israel Hospital in Boston, and on the wall across from her bed was a big sign that said, you have the right to a quiet night.

[10:00] And it said, if you're being kept awake or if you're being woken up by staff, call this number and we'll see that it stops so all you need is a hospital administration that decides to bite the bullet and say you can't do it anymore or maybe an age could do it too can i just add to that we actually have a circadian medicine program going on at the university of pennsylvania hospital right now in the cardiac step down unit not the icu we talked to the cardiologists about it and they said we can't do this in the icu because we're We're putting out fires there.

[10:37] But in the step-down unit, we have a trial going to see whether improving the circadian rhythms of the patients will improve outcomes. And we're starting to see more of that, like with Phyllis Z at Northwestern, with John Hoganesh in Cincinnati. And so, you know, there is movement. Yeah. You know, I'm thinking about the incredible amount of drug ads that are on TV, and I'm wondering can NIH take a bite into that I mean I thinking about educational ads on TV Does it make money Does NIH do those?

[11:21] Does it think about doing those? I mean, telling people, if you have trouble breathing, you... So like the public health awareness campaigns and things of that nature? So NIH has done things. We had the Garfield Star Sleeper campaign years ago when Michael Tweary was a director, which was actually extremely effective. But there are CDC has worked with the American Academy of Sleep Medicine to do campaigns as well.

[11:53] The penetration, I'm not sure how much it had gotten into the public space, but there have been awareness campaigns. We have funded researchers to actually do curricula in hospitals and things, and the reason that there is a question about sleep in the medical school exam is because the sleep investigators work because of awards or grants that NIH awarded to move those things forward.

[12:27] And so things have been done in the past. I'm not saying that they can't be done in the future, but there are other components that have been working on that space, particularly more recently the CDC campaigns or the American Academy of Sleep Medicine campaigns in collaboration with the CDC. But I think of those as more print campaigns than like television campaigns. Or am I just out of the loop on that? So do you run, do those programs run TV ads? You know, I think they were more print.

[13:01] I don't think that they ran TV ads. For the next month or so, you can't break through the political noise for any TV ads. But the drug companies do. The pharmaceutical ads are running constantly, hundreds a week. I mean, they're always running. I mean, aren't they always running? I see them so much, depending on what time of day it is, they run constantly. So, I don't know, I just always chase the dollar and see what things are about when it comes to money and what's important.

[13:35] And that's kind of like what I'm really leaning into when it comes to ideas around all of this. It's like, who is getting help? Who's not getting help? Who's being left out? Who's not getting the needs that are being met when there's so much money floating around and there are people who are suffering so much when it comes to the economy right now? and, you know, the job market and people are struggling with a recession. People can barely buy groceries. And it's just like the idea of sleep for me really came out of that space.

[14:06] It came out of a space of deeply seeing myself super sleep deprived on the border of poverty, you know, the economic systems and what it made space for me or anyone who looks like me to actually get good sleep, get good rest, get good care, get good information from doctors, be cared for in a way that is humane. So I really like what he said about the idea of maybe some of the pharmaceutical ads can bag up a little bit and we can put some stuff on TV that actually is helping people to drive them towards something that could illuminate things that they may not be aware of.

[14:43] So I appreciate that. I mean, when you look at the ad landscape, the pharmaceutical, the CPAP ads or Inspire ads, the mattress ads, the bedroom furniture ads, the crib ads. I mean, there's a lot the hotel has. I mean, where do you sleep when you're on vacation in the hotel? I mean, sleep is A big pot. part of our economy. Yes, it is. but it's all what they can sell.

[15:14] Yes. And we've seen all of those ads ten times, right? a saturation campaign and they think of something like a basic informational campaign on obstructive sleep apnea. And, you know, if you have this or someone you know has this, They need to go to a doctor. They need to get treatment. It's actually life threatening. Yeah. And by the time you've heard that ten times, I don't know. I would think there's a decent chance that people would act on it. And it's a much larger, certainly different Yeah. Cut of the population.

[15:47] than print material does. Well, I would think social media too, you could really target people who are or talking about certain things. And if you have a smart phone, app developers, a smart-- algorithm designer who can who can figure out what are the key phrases you want to target to have something pop up on their feed. Well, and I think you all are funding some of that. I know one of my colleagues, Katie Sharkey, is doing something for, you know, pregnant and new moms to to help people, help them, well, help the people who work with them understand about sleep and work with sleep. So, and they're starting to develop some material It's such a great ad they've developed that has a woman You can tell she's from Rhode Island by the way she speaks. I mean it's really, you know, gets right -- She's not a, you know, a celebrity or anything, but boy in Rhode Island, she hits the nail in the head.

[16:49] Oh yeah, the investigators, and we do that, we strongly encourage the investigators you know, develop the content and put things out. I remember talking to Recently, it was either the American Academy of Sleep Medicine or the Sleep Research Society, or maybe even both. because someone had sent me a TikTok of this young college student who was talking about sleep and the information she was giving was accurate, but it had something like three million hits. Wow. And I sent it to a few investigators like, why aren't you guys doing this? Right? Like you're the experts of, you know, you have this, this.

[17:22] essentially teenager getting all these hits and getting the message. Thank God it was accurate messaging that she was doing. But I was like you guys should be doing this type of outreach but it is something that I think some investigators are starting to get a hold to because it's just the way that we communicate is changing, right? I remember speaking to an investigator and they were talking about traditional forms of communication, like, telephones and flyers, but then talking to my niece who's 25, she was like, "Social media is traditional for me. What are you talking about? Like, this is all I know." I've never picked up a house phone to talk to anyone. Right. Whatever. Dare I say, the TikTok users are more likely to listen to the teenager than to us.

[18:05] We need Taylor Swift on our team. I'm looking at the clock and I'm afraid we need to cut this one short because our presenters do need to... make their way to classrooms. And so if I could ask the audience to not come up to ask your question now so that our presenters can have their liaisons scamper them in the direction of our students who are waiting in their classrooms. to have conversation. We will see you tomorrow morning. Please don't leave anything in the hall because it will be gathered up. So we will see you tomorrow morning bright and early. Sleep well!