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  • 2026 Nobel Prize in Medicine awarded for brain research tool called optogenetics

    2026 Nobel Prize in Medicine awarded for brain research tool called optogenetics

    Karl Deisseroth, Peter Hegemann, and Georg Nagel are the joint recipients of the 2026 Nobel Prize in Physiology or Medicine “for their discoveries concerning light-gated ion channels and optogenetics,” the Karolinska Institutet in Stockholm, Sweden announced on Monday. 

    Deisseroth, 55, a professor at the Howard Hughes Medical Institute and Stanford University; Hegemann, 72, a professor at Humboldt University in Berlin; and Nagel, 73, a professor at the University of Würzburg, Germany, developed a method that uses light, combined with genetic modifications of neurons, to switch on or off individual cells in a living brain. This makes it possible to show how nerve cells shape memories, feelings and behavior in the brain, and is being studied as a treatment for disease. 

    The work started in the early 1990s at the Max Planck Institute, when Hegemann wondered how a single-cell green alga called Chlamydomonas could swim toward light. Teaming up with Nagel, they discovered the answer: a protein called channelrhodopsin, a light-sensitive ion channel in the cell membrane that rapidly opened when exposed to light. They found that this protein worked in any cell they injected it in.

    Deisseroth then introduced the gene for the protein into nerve cells from rats, making it possible to trigger a nerve signal in the living brain with blue light and enabling scientists to identify what cells are responsible for what functions, and which are connected to one another. 

    “Optogenetics provides opportunities for mapping the brain in a way that we could once only dream of,” said Per Svenningsson, chair of the Nobel Committee for Physiology or Medicine. 

    Deisseroth spoke with STAT shortly after the announcement. “When you think about light in science or light in medicine, you think of it as an observational tool. It’s a way to collect information. But with optogenetics, it’s the complete opposite of that,” he said. “We’re not using light to collect information, we’re using light to cause things to happen … it’s using light to turn cells on or off with that millisecond precision and the cellular resolution that is essential to brain function.”

    The committee was able to reach all three winners. “It was after midnight, and I was just drifting off to sleep. It was a very unexpected, but of course very delightful call,” said Deisseroth, who was the first of the three recipients to be notified of the award. He said he hasn’t yet had a chance to speak with the others, though he “really look forward to seeing my co-laureates and talking with them.”

    When informed of the shared award, “all three said the same thing, that they thought it was absolutely wonderful to receive the prize with the other two; they called them ‘my friends,’” said Thomas Perlmann, secretary for the Nobel Committee for Physiology or Medicine. 

    “These are two people who have been frequent collaborators of mine,” Deisseroth said. “We’ve written multiple papers together, and sort of shared this journey of discovery over many years. We met at conferences, met each other’s families, shared beers at meetings and talked — as scientists do — about the things that interest them, the things that are surprising, big picture details and everything in between. I couldn’t be happier than to share this with these two friends.”

    As often happens in science, others contributed to the creation of optogenetics, though were not named by the committee.The Nobel rules limit the award to no more than three collaborators. Deisseroth nodded to the community of scientists who worked with him and his co-laureates to make their advances possible. “We have so many collaborators, colleagues, and students and postdoctoral fellows in the lab over the years,” said Deisseroth. “It’s been a very broad community, and so many things had to be solved to make everything work and to make the discoveries happen.”

    On social media, many commentators noted Ed Boyden, who was the first author on Deisseroth’s landmark 2005 paper and a Ph.D. student in his lab, should not have been excluded. Boyden, now at MIT, didn’t respond to requests for comment. The Nobel committee mentioned several other researchers in its background information, including Austrian neurophysiologist Gero Miesenböck, who achieved the first genetic sensitization to light of nonphotoreceptive neurons in 2002, and Zhuo-Hua Pan a vision scientist at Wayne State University in Detroit, who in 2004 successfully tried channelrhodopsin in ganglion cells, which became responsive to the light. 

    His work was recognized through a $300,000 grant from the National Institutes of Health, with the comment that it was a “quite an unprecedented, highly innovative proposal, bordering on the unknown.”  But a paper showing the outcome of his research, initially submitted by the end of  2004, didn’t find a publication until 2006, when Deisseroth and Boyden’s paper had already made waves.  

    The committee chair declined to comment on the reasons behind selecting the winners. 

    Jeremy Berg, former editor-in-chief of the journal Science and a former NIH institute director, told STAT, “I have followed Karl Deisseroth’s career since he received an NIH Director’s Pioneer Award as an assistant professor in 2005. He proposed a vision for optogenetics that was quite compelling and he has developed his ideas remarkably ever since. His work displays the power of engineering approaches with a deep knowledge of human physiology.”

    Berg added, “I am not at all surprised that his work has ended up with a Nobel Prize. That seemed plausible even during his Pioneer interview in 2005.” 

    Don Hilgemann, a biophysicist at the UT Southwestern, mentored Nagel in 1991 and 1992. “Georg showed real pioneer spirit in applying the methods I had developed. He was an extremely adventurous experimenter who could quickly master difficult, technically challenging methods,” he said in a note to STAT.

    There have been 235 award winners since the first medicine prize was awarded in 1901, of which 14 have been women. The youngest recipient was 31, the oldest 87. 

    The award has been given 117 times: 40 times to a single individual, and has been shared among two winners 36 times, and among three (the maximum allowed by the Nobel statute) 41 times.

    The winners will receive 12 million Swedish Kronor (SEK), or roughly $1.2 million.  

    This story has been updated with comments from Karl Deisseroth.

  • Medicare Is More Broken Than We Thought

    Medicare Is More Broken Than We Thought

    Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

    Please note that this transcript may include errors.

    Dan: Hey there. In the first week of October last year, 2025 — a whole bunch of senior citizens in Minnesota got a letter with some bad news. 

    Amy Hockert: A lot of changes coming in 2026. We know that at minimum 160,000 of you, absolutely have to pay attention to this,

    Dan: Their health insurance through Medicare Advantage was going away. 

    Erin: I was so mad. I was like, “No. Now what do I do?” And I look at my husband and said, “Now what?” “

    Dan: Folks like Erin– who lives in small-town Cambridge,Minnesota–  were going to have to find a new plan by the end of Medicare’s annual open enrollment period, which would start in a couple weeks.

    Up until now, Erin had been on a plan from a local nonprofit insurance outfit called U Care.

    UCare offered some of the most generous and affordable plans in Medicare Advantage — the version of Medicare operated by private health insurance companies. 

    But U Care was going belly up.

    FOX 9: The collapse of UCare after 40 years in Minnesota has been swift and stunning.

    Dan: Callers jammed the phonelines at Minnesota’s Aging Pathways hotline — thats the state agency that helps people with Medicare. Kelli Jo Greiner runs it.

    Kelli Jo Greiner: I don’t know any other way to describe it other than total chaos. Our phones were ringing off the hook.

    Dan: Meanwhile, in the Twin Cities suburb of Maple Grove, an insurance broker named Alison Ebert had been getting ready for her busy season, making appointments with her usual clients.

    Alison Ebert: October 1st through October 14th, I always set my appointments with my clients. I always joke I get paid in cookies and coffee because I go to their homes, we sit down. I know their families, I know their kids, their grandkids

    Dan: The day open enrollment started, she got 47 calls — from people she’d never met. People whose coffee and cookies she’d never tasted.  That was new. 

    And more would call. Because more letters were starting to go out.

    Not just from U Care. Other health insurance carriers were dropping out of the area. UnitedHealthcare, BlueCross, Aetna, Humana — all canceled Medicare Advantage plans in counties all over the state. Three counties were left with no Medicare Advantage plans at all. 

    And… this wasn’t just something that was just happening in Minnesota. Almost 3 million seniors across the country had plans in 2025 that would stop being offered to them in 2026.

    And that’s because at their headquarters, insurance companies had done their calculations, assessed their risks, and decided that offering plans to those people would no longer be profitable enough. So, seniors from Maine to California saw the number of available Medicare Advantage plans shrink by the dozen — leaving a lot of them confused, and with fewer, often worse and more costly health insurance options. 

    It’s part of a big new trend — these disappearing acts  have been increasing in recent years, and insurance companies have already signaled that more are coming. Major insurers have already announced intentions to dump plans that currently cover more than two million seniors. 

    We’ve spoken with folks in a dozen states — in rural places like Vermont and North Dakota, and in states with rural and urban centers like Maryland and Minnesota — about how it all went down last year — and what we can take away for this year.

    My colleague Emily Pisacreta and our awesome summer intern Lynn Barbera made those calls. And Emily, you called that experience “eye opening.” 

    Emily: Uh, yeah. We already knew from previous reporting that people had problems with Medicare Advantage. At first this story sort of seemed like one more thing people on Medicare Advantage had to worry about. But it turns out to be more than that. What happened last year — and is about to happen again this fall — showed us big problems, problems that affect everyone who’s on Medicare — or hopes to be one day. There are layers to this. 

    Dan: And we’re gonna peel them back. Get ready for a big dose of Medicare.

    This is An Arm and a Leg, a show about why health care costs so freaking much and what we can maybe do about it. I’m Dan Weissmann, I’m a reporter and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life and to bring you a show that’s entertaining, empowering and useful.

    Emily, a while back, we looked at problems with Medicare Advantage. How about we do a little recap?

    Emily: Yeah. 

    Dan: We were taking our first deep look at Medicare itself, and as we said then, it kind of blew our minds. 

    Emily: Before we did that story, I was under the impression that you wake up on your 65th birthday and never have to pay a medical bill again, never have to deal with health insurance companies again. In fact, that’s the dream of Medicare For All. 

    Dan: But it’s not the reality of Medicare as it exists. For one thing, signing up means making a dizzying number of choices. 

    And you basically never escape private insurance companies. No way. Turns out, they run a lot of Medicare — so you could see dozens of different plans offered by different companies. 

    But here’s the most important part: You have to choose between what’s now called Traditional Medicare — run by the U.S. Government — and Medicare Advantage plans, run by private insurance companies. 

    And they both have downsides. 

    Traditional medicare doesn’t cover everything. For outpatient medical care — for doctor visits, outpatient procedures, infusions, physical therapy, X-rays and MRIs, you name it — Medicare only pays 80 percent of the bill.  

    And those other things can get so expensive — the remaining 20 percent can run to thousands of dollars that most seniors don’t have. 

    If you want that covered — and, I mean, you do — you actually have to buy a “supplemental” policy — people call them “Medigap” plans. They’re offered by private insurance companies. And you pay a premium. 

    Oh, and did I mention that you’re already paying a premium to the feds for your Medicare? Yep. Exactly how much depends on your financial situation, but most people pay just over 200 bucks a month.

    Medigap premiums – to the private companies – are on top of that. They vary a lot — by what plan you pick, and by where you live — but the average is another two-hundred and some every month. And that number goes up every year. 

    So you’re paying all that but then you’ve still got another gap. Vision, dental, and hearing. Traditional Medicare doesn’t cover them at all. So Medigap plans generally don’t cover them either. 

    The dark joke is that eyes, ears and teeth are “luxury organs”

    Because who needs to see or hear or chew? 

    So those are some BIG gaps.

    A lot of Medicare Advantage plans offer to fill those gaps:

    MA Ad 2: This card I’m holding in my hand, it’s an example of an all-in-one Medicare Advantage membership card.

    Dan: Lots of them include what’s missing  

    Woman in Ad2: That card helps me with my vision costs, my dental costs.

    Dan: Some of them even subsidize the premium you’d be paying to the feds, even bringing it down to zero. You can see how appealing that is.

    … and insurance companies hammer that appeal home with floods of TV ads

    Plus direct mail, phone calls, and facebook ads out the wazoo. None of which mention the downsides to Medicare Advantage… 

     which are basically: All the downsides we’re all familiar with from dealing with insurance companies. 

    Their network might not include your doctors and providers. It might not include very many providers near you at all. 

    And once you find an in-network provider, the insurance company can make you jump through hoops like pre-authorization. Or deny a claim. And then you get to fight through an appeals process. 

    I talked with a guy in Texas, Robert Wolpa. He’s got HIV, a pacemaker, other stuff. He said he felt like he was spending half his days on hold, waiting to talk with badly-paid, badly-trained people.

    Robert Wolpa: I’m 71. I just turned 71 in November and I’ve got, I’ve got a little of the HIV cognizant crap. Like, my short term memory is gone. And I think to myself, what have I gotten myself into?

    Dan: This is the thing: You can be 65 years old, in totally decent shape, playing pickleball or whatever, never seeing a doctor. 

    But when you pick Medicare Advantage, most of the time you’re also choosing for an older, sicker version of yourself. Who may need to see specialists, and who may not have as much capacity to fight with insurance companies. 

    I mean, most relatively young and healthy people have a hard enough time. 

    This is where Traditional Medicare starts to look much more appealing. Practically every provider takes it, and denials are almost unheard of.

    But for most people, if you’ve chosen Medicare Advantage, it’s a no-backsies situation. 

    You can still sign up for Traditional Medicare, but you may not be able to get a Medigap policy. 

    For one thing, it may not be in your budget. Robert Wolpa got a quote: Almost 500 bucks a month. Like a third of his social security check.

    Robert Wolpa: And I said, okay. Next option.

    Dan: And lots of people don’t have the option at all. In most states, if you don’t sign up at age 65, Medigap plans are allowed to reject you if you have… pre-existing conditions. 

    Sarah Jane Tribble: It’s sort of shocking, actually, right? Like, the Affordable Care Act passes and makes it so that everybody with pre existing conditions can get insurance no matter what, but it leaves out the people who might need that the most, who are 65 and older. 

    Dan: That’s the person who had introduced us to Robert Wolpa, and helped us understand this whole issue. Sarah Jane Tribble,a reporter with our pals at KFF Health News had just published her own story about the pitfalls of Medicare Advantage.

    This comes as a big surprise to a LOT of folks — as Sarah Jane found out while she was reporting her story, and talking about it with friends.

    With all of these… advantage — all the marketing, and all the gaps it fills– Medicare Advantage has grown by leaps and bounds in its 20-some years. 

    At this point, the majority of seniors are on Medicare Advantage.

    So, OK: Long recap, but. That’s what we KNEW a couple of years ago. 

    And it turns out — based on what happened last fall, and what’s about to happen this year — the problems are way worse than we knew. 

    Which brings us back to our friends in Minnesota. In early October 2025.

    News anchor 1: In 90 days, thousands of Minnesotans will lose their Medicare Advantage coverage.

    News anchor 2: Many major health care providers are dropping their Medicare Advantage plans in 2026. 

    Dan: So, Emily. What the heck happened?

    Emily: So that local nonprofit insurance company – UCare– they went broke, and all their Medicare Advantage plans got pulled from the market. Pretty quickly after that, UnitedHealthcare, Aetna, and others sent break up letters of their own to thousands of their beneficiaries.

    Lots of people turned to insurance brokers for help. 

    But many brokers weren’t calling them back. Because things had started going haywire for them too. Insurance broker Alison Ebert told us she was used to getting paid in cookies and coffee – and this time around, she would mean that literally — because in the days leading up to open enrollment she got an unusual call from her contact at UnitedHealthcare.

    Alison Ebert: She said, “I just wanna let you know before you get the email, we’re not paying commissions this year.”

    Emily No commissions. No payment from the insurance company for anyone she would enroll in their Medicare Advantage plans. Which is for health insurance brokers — the whole business model. 

    Alison Ebert: And my heart just sunk. That was the first phone call, and one by one thereafter, all the major carriers except for Allina Health Aetna, followed suit.

    Emily: Other brokers in Minnesota told me the same thing. I asked Alison: why do you think they cut commissions? She says a rep for one of the big companies told her the ugly truth. 

    Alison Ebert: With UCare exiting the market,” she said, “Let’s face it, we don’t want everybody that sunk UCare on our plan. And so this is how we’re gonna c- curb enrollments.” 

    Emily:  Alison got the message: These insurance companies wanted to curb enrollments. They specifically didn’t want to insure people who they tho  ught “sunk UCare” — meaning, people who used health care. Who filed claims. Who cost money.If brokers didn’t get commissions for selling plans to these folks, a lot fewer of them would sign up.  

    Alison Ebert: Because they’ve always told us about 80% of the sales comes through brokers like us.

    Emily: Now, a few weeks later, it was October 15, open enrollment was starting, and her phone was ringing off the hook. 47 people on day one. And more every day after that. Plus all her regular clients — the ones whose grandkids she knew by name.

     Alison had to decide what to do  — could she afford to help all those people for free? 

    Alison Ebert: I have kids. I mean, I deserve to get paid. I need to put gas in my tank to go to these people’s homes.  

    Emily: But Alison didn’t think it was right to leave people hanging.

    Alison Ebert: I left a message on my answering machine saying, “You know, due to the fact that we’re not getting paid this season, a lot of brokers left the market and I’m just returning calls as they come. But just be aware that it might take me a couple weeks to get back to you.”

    Emily: Instead of going to everyone’s house, she set up office hours at a coffee shop to be able to see as many people as possible.

    Meanwhile… Kelli Jo Greiner and her colleagues at the state’s Medicare hotline were scrambling too.

    Kelli Jo Greiner: We had wait times of two hours. Nobody wants to wait for even 10 minutes, let alone two hours

    Emily: She and her team had to improvise.

    Kelli Jo Greiner: We have staff that don’t usually do Medicare counseling. They help with, like, long-term care and other areas, and we even put those folks on the phones to help

    Emily: And she wrangled a weekly spot on FOX 9 in the Twin Cities to answer big questions.

    Amy Hockert: Medicare Monday is what we’re calling it. A lot of changes coming in 2026. Kelli Jo, thanks for joining us.

    Kelli Jo Greiner: Well, thank you. I’m glad to be here again. 

    Amy Hockert: All right. Well, let’s roll through it here.

    Emily: Kelli Jo told viewers: The most important thing is to be proactive. If you don’t do anything, the system will put you into traditional Medicare — but without a Medigap plan. Oh, and by the way, she told them: Your drug plan will probably disappear too, unless you sign up for a new one.

    So — she said, the good news, as far as it goes is: Right now you have a choice. And it’s just like the one you had when you were 65. You get to basically start over if you want, and get a Medigap plan even if you have a pre-existing condition. This is a special situation, they can’t reject you. 

    And once you’re on they can’t tell you which doctors to see. Almost every doctor in the country takes traditional Medicare.   

    Kelli Jo Greiner: And for many people that is a huge advantage,’cause we have a lot of snowbirds here that go south for the winter.

    Emily: But she says most people she talked with decided they just couldn’t afford those Medigap premiums. They were stuck with Medicare Advantage. Only now they had fewer and crummier Medicare Advantage plans to choose from. 

    Also, they were more expensive than these folks were used to. 

    Kelli Jo says a lot of people had been on plans with no monthly premium — but now all those plans were gone.  

    Kelli Jo Greiner: and so they ended up having to switch to a plan with a premium

    Emily: And in a lot of cases, without some extra benefits that Kelli Jo says are a big draw. Like discounts on groceries — or free gym memberships, a feature called Silver Sneakers.

    Kelli Jo Greiner: and I cannot even tell you how many people called us about Silver Sneakers. They were so upset about that change.

    Emily: So people ended up paying more than they were used to —  and getting less. 

    Dan: OK. So to recap: some Medicare Advantage plans disappeared.

    Emily: Yes.

    Dan: The remaining plans weren’t great.

    Emily: Right.

    Dan: And most people chose them anyway, because they couldn’t afford Medigap.

    Emily: Correct. And we can expect more of the same this year– and for who knows how many years ahead.

    Dan: So Medicare Advantage is getting shakier– even while it keeps growing. 

    Coming right up: how the dynamics behind all of this add up to trouble for all of Medicare. And what we can maybe do about it.   .

    This season of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News — that’s a non-profit newsroom covering health issues in America. Their reporters are amazing — you’re about to hear from another of them. We’re honored to be their colleagues.

    Dan: Kelli Jo Greiner told us many folks who lost their Medicare Advantage plans  just couldn’t afford Medigap supplements. 

    Which, as we’ve been learning, has been one of the big dynamics behind the growth of Medicare Advantage in the first place. 

    Emily: Our colleague Julie Appleby found recently, that dynamic is getting starker.

    Julie’s a senior correspondent with our pals at KFF Health News.  

    Julie Appleby: I cover all things health insurance pretty much, uh, from the Affordable Care Act to Medicare, other kinds of health insurance programs, uh, that kind of thing. 

    Emily: Earlier this year, Julie got a call from a broker in Illinois.

    Julie Appleby: And he was telling me that more than, like, 80 of his customers were enrolled in a Medicare supplement,

    Emily: A specific plan. One that usually had low premiums. 

    Julie Appleby: But they suddenly raised their rates by 45%. And he said, “In my 49 years of doing business as a broker, I’ve never seen a premium increase be effective immediately on everyone. So I thought, “Hey, I’m gonna start looking into this.”

    Emily:  She found some good data from a company called Telos Actuarial — which showed: this price hike was part of a trend.

    Julie Appleby: There were increases going on kind of throughout the industry.

    Emily:. On average, the data showed premiums on Medigap went up almost 17% from the previous year.

    Not as high as that one plan with 45 percent increase, but still nothing to sneeze at. Brokers and other experts told her: That kind of increase used to be almost unheard of. But for the last bunch of years, it’s become a new normal. 

    Julie sees a connection with the growth of Medicare Advantage. 

    To understand it — and why everything about Medicare could be getting shakier and shakier — Julie’s gonna introduce us to a key term: Risk Pool. It’s a big part of how insurance prices get set.

    Julie Appleby: Insurance is a giant pool, right? We all are in the pool, and everybody kinda shares the cost. The insurance company has to sit down and try to figure out, “Well, gee, I’ve got this pool of people. How sick are they? How, how often are they gonna go to the doctor? How often are they gonna be hospitalized?” And then calculate out, “Okay, so what might that cost me?”

    Emily: So a lot depends on: Who’s in the risk pool for any given plan? If Medigap plans are more expensive than Medicare Advantage — but provide better coverage — then, who’s gonna choose the Medigap? People who think they’re gonna *need* that better coverage. Sicker people.

    And with millions of people getting the chance at do-overs — because their Medicare Advantage plans got nuked — these Medigap insurers have a bunch of new customers, who — it seems reasonable to think — may be sicker.  

    Julie Appleby: So these carriers are, then having to think, “Wow, I’m taking all these people on in this region, so I’m gonna have to raise my premiums to cover what might be those expected costs.” 

    Emily : And as premiums grow and grow, what we could see is a kind of vicious cycle. Because as new people turn 65, they’re looking at Medigap premiums that are harder and harder to afford.

    So more and more people are attracted to Medicare Advantage. I spoke with a researcher named Laura Skopec – she studies Medicare at the Urban Institute, an economic and social policy think tank. Here’s how she put it: If this trend continues — with Medigap prices driving more people to Medicare Advantage

    Laura Skopec: We’re gonna see a traditional Medicare that is sicker and wealthier, which is sort of a weird combination, but it’s gonna be sort of the sickest people that really need good access to specialists, wanna be able to go to the cancer center, you know, any sort of doctor they wanna go to, and the people that can afford Medigap

    Emily: Like, the sicker you are, the more you need this, and the more people who need it, the more expensive the supplements will be.

    Laura Skopec: The risk pool just keeps on worsening.

    Emily: So, expect Medicare Advantage to keep growing. And — as Laura points out — getting more expensive.

    Laura Skopec: The Medicare Payment Advisory Commission says we spend about fourteen percent more for everyone who chooses Medicare Advantage over traditional Medicare, and that was really not the point of the Medicare Advantage program, right? It was supposed to use sort of private sector processes to lower costs in Medicare, and it has not done that. 

    Emily: In fact, insurance companies are under increasing scrutiny for overcharging the government for Medicare Advantage. 

    The feds have been trying to impose some rules to cut down on those extra profits – all very technical stuff which we could devote a whole episode to.     

    Dan: Maybe we should

    Emily: Yeah and crackdown may have played a role in insurance companies pulling some of these plans off the market. And they say they’re gonna keep yanking more plans off the market unless they get MORE federal dollars. 

    Laura: They’re saying that their costs are going up for paying claims, which is probably true, and they point to market exits and other issues as, like, we need a pay bump here to stay in the market.

    Emily: All of this — pulling plans off the market, reducing benefits, trying to control who enrolls in their plans — all of this stuff is likely to keep happening. 

    So we should talk about what that looks like on the ground, and how seniors can navigate all these changes. 

    Remember Erin in Cambridge, Minnesota? 

    What happened to her really exemplifies how this kind of thing can play out. And how we can support each other.

    So Erin had gotten kicked off her plan when the whole enterprise behind it, UCare, collapsed.

    Erin had been really happy with UCare for the four years she was on one of their Advantage plans.

    Erin: You call their customer service and they are very helpful. I loved it.

    Emily:  she had access to specialists. 

    Erin: A thoracic, a neurologist, a urologist, a nephrology. An ENT specialist. 

    Emily: Erin had suffered four heart attacks in her late fifties. Because she couldn’t work, she started getting social security and Medicare early — when she was 58. She doesn’t really remember how she ended up picking Medicare Advantage over traditional Medicare.

    But it was working for her. Until they pulled the rug out from underneath her.

    Erin: I did not want them to go anywhere. I heard that, I was just in tears.

    I was so mad. I was like, “No. Now what do I do?” And I look at my husband and said, “Now what?” “

    Emily: And she says her husband had the answer immediately.

    Erin:Well, we’ll just call Desi.”

    Emily: We’ll just call Desi.

    Dan: Wait a minute–  Who is Desi?

    Emily: You gotta meet Desi. 

    Desi Panek: I’m Desi Panek, and I work at the Seven County Senior Federation here in Mora, Minnesota.

    Emily: That’s a member-led organization of seniors in eastern and central Minnesota who came together to advocate for themselves, and to help each other with transportation and other stuff seniors need. Including: signing up for — and dealing with — Medicare. 

    I met Desi and her boss Lisa Krahn, the Federation’s director, as they were gearing up for this year’s annual enrollment period. 

    Lisa: It can’t be as bad as it was last year 

    Emily: Yeah yeah. 

    Desi: We’ll find out soon. 

    Lisa: Oh, God 

    Emily: Yep, hold onto your hat. 

    Emily: Yep, they’re still dealing with the fallout from last year. This is Lisa:

    Lisa Krahn: Still quite a few people who show up, who are calling now, who don’t realize that they haven’t had a plan all year saying, “I just don’t have anything because my old plan left. Well, I wasn’t really paying attention to the mail they were sending me,” kind of a thing.

    Emily: Some of those people only found out when they got a bill in the mail. Or when they tried to pick up a prescription, and had to pay out of pocket cuz they didn’t have a drug plan anymore. 

    Luckily, Erin got the news before it was too late. She and her husband called Desi, and Desi helped them enroll in a new Medicare Advantage plan. Which Erin says, isn’t as good. 

    Erin: Right now I’ve got $1,700 out of pocket going to a pair of hearing aids

    Emily: She’s not a fan of the customer service. And she says she had to stop taking one of her preventative medications because her drug plan changed.

    Desi and Lisa are operating very much at ground level helping people like Erin, but they definitely have thoughts about the big picture –especially the stark choice between Medicare Advantage and traditional Medicare.

    Lisa Krahn: original Medicare is that thing you’ve been waiting your whole life to get. It’s good everywhere. And once you’re in, you’re in. 

    Emily: But it’s become too expensive for most people. Meanwhile, Medicare Advantage can really limit people’s access to care.

    Lisa Krahn: So, looking for a middle ground between those, it’s, it’s… There, there should be better choices, frankly, instead of such extreme ones.

    Desi Panek: Extreme is a really good word for that. I agree. 

    Emily: Extreme meaning there’s a big hole in one and there’s too many…

    Lisa Krahn: Restrictions on the other. But all the millions we’re dumping into advertising and these private companies, that could have filled the holes on original Medicare a long time ago. And that’s just antithetical to the function and the existence of the insurance industry, which, like the monarchy, maybe we can stop believing in. I’m revealing myself as a single-payer Medicare for All advocate, but we need better Medicare, frankly, you know? It always been shortchanged.

    Emily: Dan, speaking of Medicare For All.

    Dan: Yeah we really shouldn’t do an episode like this without mentioning it. Especially because it’s been coming up so much in this year’s election season. In Michigan, Abdul El-Sayed won the Democratic Senate primary, and Medicare for All was his number-one pitch.

    Abdul El Sayed: Yes, we really can guarantee healthcare in this country. Yes, we really can do it while spending a lot less and getting a lot more if our healthcare doesn’t still fund tens of millions of dollars in healthcare CEO, uh, salaries on top of it.

    Emily: People like Lisa — and Abdul El-Sayed — think of Medicare for All as a way to also plug the holes in existing Medicare. 

    Dan: Well, huh. OK, I mean, one thing I’m really tuning into is that all these big gaps in Medicare are all driven by the fact that ALL of Medicare — our big public benefit — is actually set up so it requires insurance companies to make a profit in order for it to function. Whether they’re selling Medicare Advantage plans, or Medigap policies.

    But then, how do Medicare for All advocates say that spreading Medicare to everybody makes the math actually work better?

    Emily: It’s all about that term Julie Appleby introduced us to:  Risk pool. How “risky” the people you’re insuring — the pool — are as a whole. Meaning, how much health care they need on average. The calculations change a lot when the pool is everyone, including people who are 25 as well as 65 and 95 — and when tax money funds health care directly instead of filtering it through private health insurance companies to administer and also take a profit.

    In fact, a recent study out of Yale estimates that Medicare For All — that is a Medicare that is completely void of private insurance companies — would reduce annual health expenditures by 1 trillion dollars every year.

    Dan: But that’s not just taking insurance companies out of Medicare — it’s taking them out of the whole U.S. health care system.

    Emily: Right. In the meantime, some politicians in Washington are talking about tweaks — big and small — to just Medicare itself. 

    Vermont Senator Bernie Sanders–

    Dan: the original Mr. Medicare For All 

    Emily: Yeah – in the meantime, he says we should extend traditional Medicare to cover vision, hearing, and dental. He’s introduced a bill in the Senate to do just that. 

    And Oregon Senator Ron Wyden recently introduced a bill that would put an out-of-pocket max on traditional Medicare. That way, people wouldn’t need supplements as much, and Medicare Advantage wouldn’t look as tempting.

    Both of those ideas would mean putting more federal money toward traditional Medicare.

    Dan: Which doesn’t SEEM like something Congress is likely to do. But what this whole story shows is: it seems like it’s gonna cost us either way. Either we put more public dollars into traditional Medicare, or we keep paying higher prices, collectively and individually,

    As for the here and now. If you have Medicare Advantage, but you don’t have a Desi or a Lisa to call, Emily, they gave you a breakdown of what you need to know.

    Emily:Yep. Their first piece of advice: open every piece of mail from your insurance company. That’s where you’re going to find out whether your plan is being cancelled. Or where you might find out they’re trying to auto-enroll you into a new plan, which might not be the best one for you.

    Desi Panek: The past couple of years we’ve had plans that end a specific plan, but will auto-enroll the e- the enrollee into another plan in the same company.

    Lisa Krahn: Crosswalking

    Desi Panek: Yes, so that’s a big deal. Pay attention to your mail. Um, you’re gonna get stuck with huge premiums if you just let it roll.

    Emily: And find someone to talk to.

    Remember Kelli Jo who runs the Medicare hotline for Minnesota? Every single state has one of those agencies. They’re called SHIP — S H I P — state health insurance assistance program. Google your state, SHIP, and Medicare

    If you can’t get through, there’s always insurance brokers. Desi has some advice on measuring up whether a broker is trustworthy.

    Desi Panek: Ask them if they sell every product available to you in your area. That’s one of the biggest things. I think that a lot of people just assume they’re gonna go to a broker or an agent and they’re gonna get the full scope, and that’s not necessarily true.

    Emily: You might want someone who sells Medigap supplements as well as Advantage plans. Someone who does that may be less inclined to push you into whatever’s paying them the highest commissions.

    Desi Panek: Word of mouth is a big deal for a lot of people, so asking your friends, your neighbors, uh, “Who did you work with? Are you happy? Are you unhappy? What was the experience like?”

    Dan: Talking to your friends and neighbors. It’s like, we gotta rely on each other.

    Emily: Which is why I’m kind of obsessed with this Senior Federation thing. People banding together to share information and resources to navigate this ongoing mess.

    Desi and Lisa’s group has been operating since 1975. There used to be a robust network of similar groups across the state. Theirs is the last one, but Desi says they’re going strong.

    Desi Panek: We’ve got our beautiful community and our thrift stores that keep our doors open and allow us to give that good information out, um, whether it’s what people wanna hear or not.

    Dan: And it went by kinda fast but I think I heard her say thrift stores?

    Emily: Yep! They have a side hustle. 

    Lisa Krahn: We run two thrift stores, the One More Time stores, which give us financial independence. So we’re not dependent on just memberships and just counseling fees or service fees. 

    Emily: That’s awesome, yeah, I’m dying to go to those thrift stores. I saw it on the website and I was like…

    Desi Panek: Did you see that we won Minnesota’s best thrift store?

    Emily: Stop it.

    Desi Panek: I mean it.  

    Emily: That’s so cool. Oh my God. 

    Lisa Krahn: By the Minnesota Star Tribune, yes. It was a popularity contest.

    Emily: Amazing. Wow.

    Dan: Wow for sure. Emily, thank you so much for all of this reporting.

    So here’s where we landed: Medicare is way more broken than we knew!  And we already knew it was kind of a confusing mess with a lot of holes. 

    Fixing it will require a huge lift.  The kind of thing that hasn’t seemed like a political possibility. And everybody will have BIG differences of opinion about how a fix should work. There are people who think the government shouldn’t be involved in health care at all. 

    Meanwhile, we’ve got what we’ve got.  We’ve got each other. 

    And… you just never know what might be possible.

    Next time on An Arm and a Leg, we’ll hear about what might be the most radical health care experiment since Medicare itself. 

    And the two guys — a Democrat and a Republican — who made it happen.

    Till then, take care of yourself. 

    This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from our summer intern Lynn Barbera and me, Dan Weissmann— and edited by Ellen Weiss. Izabella Kulkarni provided additional production help.

    Reporting for this story was supported in part by Arnold Ventures. Listeners like you are our biggest source of support, and we need you more than ever. If you like what you’re hearing and want it to continue, head to arm and a leg show dot com, slash, support.  

    Adam Raymonda is our audio wizard.

    Our music is by Dave Weiner and Blue Dot Sessions. 

    Amanda Boyd is our Operations Manager. Bea Bosco is our consulting director of operations. 

    An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

    Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

    An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

    And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

    They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

    Finally, thank you to everybody who supports this show financially. Listeners like you are our biggest source of funding.

    You can join in any time at arm and a leg show, dot com, slash: support.

    Thanks! And thanks for listening

  • Opinion: Will Claude ever win a Nobel Prize for medicine?

    Opinion: Will Claude ever win a Nobel Prize for medicine?

    On Monday morning, the Nobel Prize for medicine was announced. This year, I wonder: Will Claude or a future artificial intelligence agent ever win the most prestigious award for medical discovery?

    Imagine a future AI agent responding to a scientist’s insightful prompt by successfully identifying a completely novel approach to curing cancer, along with a detailed and actionable plan for implementing it. Given the toll of cancer on our species, I suspect few today would consider that a bad outcome.

    But as a former medical school dean who was regularly called upon to adjudicate complex issues of credit, I’m uncertain how credit for such a future world-changing discovery would or should be assigned. Until today, human scientists have been the agents responsible for discovering cancer cures, and for doing so they (and key associates) have been showered with academic credit and awards, perhaps even a Nobel Prize. Are we now entering a world in which some (or all) Nobels will be awarded to Claude, ChatGPT, or their AI successors, rather than human scientists? And if so, would it matter?

    The Nobel statutes don’t mention “human” but refer instead to “persons.” In 2024, two of the three winners of the Nobel Prize in chemistry were given credit for their work on the AlphaFold model at DeepMind — even though many more were involved. So without changes to the rules, a future prize for a discovery made by AI would most likely go to some “persons” given credit for making the AI possible — at least at first. But the committee may elect to change the rules or interpret them differently. The Nobel Peace Prize, for instance, has gone to organizations rather than persons.

    Today, credit for discovery plays a central role in the reward structure of science. As “the currency of the realm,” credit powerfully influences the norms and practices of the research ecosystem. It’s required for scientists to secure appointments, promotions, funding, access to students, and other necessities. It’s also a mechanism for evaluating research impact and providing accountability for research claims.

    It didn’t always work this way. The current credit ecosystem arose in the mid-19th century, as science emerged as a profession alongside the rise of the modern scientific journal. It’s been further modified by many factors, from today’s online publishing platforms to new means for assessing and quantifying scientific impact, and the increasingly interdisciplinary and team-based nature of research.

    As we begin to acknowledge AI as a generator of scientific discovery, will the approach to scientific credit be transformed as well? Current and future scientists would certainly like to know.

    Despite many unknowns, it’s hard to imagine the status quo holding. In perhaps the most likely outcome, humans will continue to be responsible for many discoveries, often aided by AI along the way. The credit ecosystem will continue to recognize these human achievements, while finding ways to appropriately recognize the contributions of their AI collaborators.

    But if AI itself is recognized as the responsible agent for some discoveries — even profoundly important ones, such as a cancer cure mentioned above — how would credit be handled? Would assignment of credit as we know it today even matter?

    In that world, humans might retain (for a while) a desire to acknowledge the role of AI in those discoveries, even bestowing previously human-only awards upon the responsible AI agents. Perhaps some credit would also go to their human creators, those putting forth insightful prompts, and those creatively implementing the work.

    But in a world of predominantly AI-driven discovery, the current role of credit as an incentive for the human research ecosystem would dramatically change.

    In considering this future, we must consider another role that credit plays. Beyond serving as an incentive and accountability mechanism in the human academic research ecosystem, there are commercial incentives for discovery, and credit plays a different role in that setting. A major commercial incentive for biomedical research involves the awarding of patents for discovery, and today only humans are eligible to be named discoverers. If future laws change to allow recognition of AI agents and/or their human creators as discoverers (with or without human collaborators), how might this affect accountability, ownership, and the ability to profit from discoveries?

    For research conducted today in both academic organizations and for-profit companies, ownership of intellectual property is generally held by these organizations rather than the human discoverers now named in patents. Patent law might evolve to allow organizations to name AI agents — even proprietary AI versions — as discoverers. But assigning credit would remain complicated to the extent humans will likely play creative roles in successfully implementing AI-generated ideas, though efforts are underway to create AI-automated research systems.

    Today, the science community is composed of humans who seek and often compete with others for discovery as well as credit, and this feature of scientific culture is believed to play an important role in the success of the enterprise. As AI becomes a key enabler and even primary driver of discovery, the current culture of credit will evolve to accommodate that reality. Changes to the credit economy may be among the many trade-offs we accept to realize the benefits of AI-driven discovery, in biomedical research and other domains of human activity.

    Whether an AI agent will ever receive a Nobel laureate is, at least in part, a question about what jobs we want credit to perform. If it’s mainly an incentive for human scientists and the overall enterprise, its role will change as machines play a greater role in discovery. If credit continues to influence allocation of trust, resources, and responsibility, those needs will persist, necessitating decisions on how best to manage them in an AI dominated research ecosystem. This may be further complicated by recent debates about whether AI agents may evolve into moral agents whose status would justify their receiving credit for “their work.” 

    I don’t know how these questions will ultimately be resolved. And I suspect the answers will differ across diverse domains related to research: human scientific careers, journals, funders, universities, biopharmaceutical companies, patent offices, and yes, prize committees. The current system was designed for a world of human discoverers. Though that day may never be fully behind us, we must begin serious conversations about what changes the age of AI science will bring to scientific credit.

    Jeffrey S. Flier is a Harvard University distinguished service professor and the former dean of Harvard Medical School.

  • Clinical Trial Site Selection and AI: Look-Alike Modeling Across Real-World Data and Care Delivery Signals

    Clinical Trial Site Selection and AI: Look-Alike Modeling Across Real-World Data and Care Delivery Signals

    Clinical Trial Site Selection and AI: Look-Alike Modeling Across Real-World Data and Care Delivery Signals
    Aaron Cohen, Vice President, Data Strategy at Definitive Healthcare

    Site selection and enrollment failures are persistent challenges for life sciences organizations. A Tufts Center for the Study of Drug Development analysis of nearly 16,000 investigative sites across 151 Phase II and III global trials found that nearly half of all selected sites either failed to enroll a patient or under-enrolled.1 Site-selection decisions commonly draw on historical performance indicators like prior trial participation and past enrollment, typically favoring sites with an established track record over fresh site opportunities. This creates a sampling problem: if the pool of potential sites is largely composed of those selected in previous trials, analyses of that pool will naturally favor characteristics associated with prior selection. When sponsors draw candidates from a pool shaped by prior selection decisions, established sites are more likely to be selected again and trial speed, diversity, and overall quality are potentially impacted.   

    AI can help organizations identify new clinical trial sites by evaluating a broader range of characteristics to inform site selection so that appropriate candidates are not overlooked. Using predictive algorithms to target new research characteristics including suitable patient populations, investigators, and clinical capabilities, among other data points, sponsors can potentially identify sites that are a unique fit, expanding their approach to site selection.

    Basing site selection on trial history

    Sponsors commonly evaluate sites across four broad categories: likely eligible-patient volume, clinical capability, investigator availability, and prior-trial performance. Problematically, these criteria are frequently measured using historical proxies, with past trial participation among the most readily available. As a result, these screens tend to return sites that already have a research history; they also fail to address the highly protocol-specific nature of enrollment.

    By leveraging different data points for site selection, sponsors can identify the next generation of capable clinical trial sites. The key to tapping into new opportunities is broadening sponsors’ traditional searches to include specific characteristics of a particular trial. 

    Further informing a sponsor’s site selection approach, data shows that trial participation varies sharply by care setting. For example, across Commission on Cancer programs from 2013 to 2017, the overall adult cancer treatment trial participation rate was 7.1%.2 

    Participation rates varied significantly by program type:

    • 21.6% at NCI-designated comprehensive cancer centers
    • 4.1% at community programs
    • 5.4% at academic, non-NCI-designated programs
    • 5.7% at integrated network programs

    While these NCI findings reflect data from several years ago, little suggests that site selection practices have changed meaningfully in the interim. This noted variation is impactful because a site with a strong trial participation history is likely to appear more attractive in a selection process than those with little or none. Prior participation is a real signal. The problem is that it is also a filter, and using it as a primary screen ensures the pool never expands.

    Selecting the next generation of sites with AI

    By identifying specific characteristics related to clinical capability, patient population, investigator or site capability, and data visibility, AI-enabled tools can perform a look-alike analysis to find sites that resemble other ones that have successfully conducted a very similar trial, potentially surfacing new sites that are an appropriate match but lack a trial track record.

    Using real-world patient claims data, procedure volumes, investigators’ expertise, and capabilities to perform specific services and procedures, AI can evaluate broader signals unrelated to trial history. This can be particularly important in the rare disease space, where diagnosis codes are often not specific enough to identify the patients who meet a study’s criteria. By incorporating broader clinical and longitudinal signals, AI can estimate which patients are likely affected by the disease of interest and, by extension, where those patients are receiving care. This can help sponsors identify qualified sites that may be overlooked by diagnosis-code- or trial-performance-based approaches alone. 

    Although these models rely on prior data, they can use care-delivery and patient-level signals to estimate future suitability without requiring prior performance in a similar trial. AI is not a shortcut around the limitations of the underlying data, but rather a tool that can evaluate more data at scale. The opportunity comes from evaluating different signals, such as patient populations, care-delivery patterns, investigator expertise, and protocol-specific capabilities that can help identify qualified sites traditional approaches may overlook.  

    The foundation of any analysis is and always will be the quality of the input data. AI makes it possible to evaluate larger and more complex datasets. Where data capture can be reliably estimated, it may also help differentiate genuinely low patient volume from limited data visibility.

    It can be effective at extracting variables from clinical text where appropriately governed data are available to supplement site validation. AI can also be used for modeling across full feature sets at scale, beyond manual feasibility capabilities, to screen large numbers of sites that lack prior trial experience.

    While AI cannot fully resolve trial eligibility from claims data, determine site selection, or directly recruit appropriate patients, it can quickly provide valuable estimates, helping sponsors better understand the patient population that is likely to meet treatment criteria. Of course, sponsors will still need to thoroughly assess the capabilities of sites and investigators, and consider the primary factors for managing and running the trial.

    A practical way to evaluate these approaches is through a controlled exploration cohort. Sponsors could reserve a defined percentage of candidate sites for model-identified, trial-naïve organizations and subject them to the same readiness assessments and operational reviews as traditional candidates. Enrollment and study performance could then be measured against established benchmarks. This allows organizations to test whether expanding the candidate pool improves recruitment and site performance without abandoning proven site-selection practices.

    Life sciences organizations don’t need to abandon their current site-selection approach entirely, but they should recognize that relying too heavily on past enrollment performance can create a self-reinforcing system in which the sites selected yesterday become the sites considered tomorrow. This approach comes at a cost: a smaller and less diverse enrollment pool, limited geographic and demographic representation, overlooked patient populations, slower recruitment, and higher costs. By incorporating AI-enabled approaches into site selection, sponsors can base decisions on capabilities and patient populations in addition to prior trial experience, broadening the candidate pool, expanding potential matches, and reaching more patients.

    References

    1. Getz, K. “Enrollment Performance: Weighing the ‘Facts’.” Applied Clinical Trials, May 2012, Vol. 21, Issue 5. Tufts CSDD study of nearly 16,000 investigative sites across 151 Phase II and III global trials conducted 2008–2010, with performance data supplied by 10 pharmaceutical companies and two CROs; typical trial ran in 11 countries among adult patients. Enrollment activation rate is defined as the percentage of sites ready to enroll that enroll at least one patient. Findings: 11 percent of ready-to-recruit sites enrolled no patient; 41 percent of activated sites did not achieve the target enrollment number, defined as a band from sites enrolling only one patient through those missing target by 10 percent or more; 40 percent hit target and 15 percent exceeded it; sites enrolling at least one patient reached 85 percent of target on average; and 48 percent of all selected sites enrolled nobody or under-enrolled.
    2. National Estimates of the Participation of Patients With Cancer in Clinical Research Studies Based on Commission on Cancer Accreditation Data,’ Journal of Clinical Oncology, 2024, doi:10.1200/JCO.23.01030 (covering 2013-2017).

    About Aaron Cohenthe Author: 

    Aaron Cohen is Director of Life Sciences Solutions Consulting at Definitive Healthcare. He specializes in healthcare claims data and real-world data, with deep expertise in claims analytics, provider reference data, patient tokenization and linkage, and cloud analytics. In his more than seven years at Definitive, Aaron has worked in Customer Success, Solutions Consulting, and leadership roles. He leads a team of subject matter experts supporting biopharma, diagnostics, and medical device customers, and is a co-author on a conference poster analyzing Medicare claims data.

    Prior to joining Definitive, Aaron focused on patients’ access to novel medical devices at a reimbursement consulting firm, where he was a Definitive Healthcare customer. Aaron is completing an MS in Data Science at the University of Colorado Boulder.

  • GenAI’s First Steps Toward Measurable Therapeutic Impact in Mental Health: Reviewing the READI Framework

    GenAI’s First Steps Toward Measurable Therapeutic Impact in Mental Health: Reviewing the READI Framework

    GenAI’s First Steps Toward Measurable Therapeutic Impact in Mental Health: Reviewing the READI Framework
    Hadeel Abu Bake, Senior Healthcare IT AI Consultant at ScienceSoft

    Over the past two years, generative AI has already shown its value in healthcare documentation and workflow support. Ambient scribing is one of the clearest examples: by reducing note-taking burden, it helps clinicians spend less time on routine tasks and more time with patients.

    The next logical question that is gaining traction now is whether generative AI can deliver measurable therapeutic benefit in mental health care.

    A serious test of that notion came from Therabot, a purpose-built generative AI therapy chatbot tested specifically for symptom relief. In the first randomized controlled trial of its kind, participants reported significant reductions in depression, anxiety, and eating-disorder risk symptoms, as well as levels of trust and communication comparable to those reported in human-therapist interactions. 

    That said, the gap between workflow support and direct therapeutic impact remains substantial. Tools that assist clinicians with routine tasks are judged mainly by efficiency and usability. Clinical applications face a much higher bar: they must measurably improve outcomes, operate safely in sensitive situations, and fit within clear governance and oversight expectations.

    Is Your AI Ready for Patients? A Framework for Mental Health Pilots

    The Therabot trial raises a question of practicality: what should organizations look at when deciding whether a generative AI tool is ready for therapeutic use in mental health care? Clinical evidence is a big part of the answer, but not the whole answer.

    One of the first attempts to translate AI model “readiness” into a set of mental health-specific principles is the READI framework (Readiness Evaluation for AI –– Mental Health Deployment and Implementation). Let us walk through those principles and connect them with practical ways organizations can apply them.

    Safety is the starting point. The READI framework emphasizes that AI systems should never encourage self-harm, substance misuse, or other risky behaviors, even inadvertently. The models should be carefully constrained in scope and supplemented with automated crisis detection. In the Therabot RCT, the team monitored conversations for crisis language and built in escalation pathways to connect participants with human support when needed. Safety also extends to avoiding “countertherapeutic” traits such as rigidity or dismissive responses, which could alienate patients. Organizations can strengthen this dimension through pre-deployment stress testing, simulated high-risk dialogues, and continuous monitoring with clear adverse-event reporting mechanisms.

    Next is privacy and confidentiality. The field of mental health handles extremely sensitive data about a person: details of trauma, substance use, or family relationships that patients may not have shared anywhere else. READI calls for treating this information with at least HIPAA-level protections, even if a given tool technically falls outside HIPAA. Organizations should be explicit about what happens to user data, ensure consent is granular and informed, and enable patients to see and manage how their data is used. 

    Equity highlights the risk of leaving certain groups behind or reinforcing bias. In psychiatry, this risk is especially prominent because language, culture, and context shape how people describe their symptoms. A model that sounds helpful and emotionally attuned to one group may respond awkwardly or insensitively to another. To mitigate this, developers and deployers should test performance across diverse groups, disclose the demographic composition of training and testing data, and report outcomes separately for relevant subpopulations. Fair-aware techniques might include curating culturally varied prompt scenarios, testing responses with bilingual or multicultural users, and fine-tuning outputs for more inclusive language. Reporting should also include real-world measures of engagement and satisfaction across groups.

    Effectiveness calls for evidence that the tool actually works in representative settings. The Therabot trial, for instance, tracked changes on standardized depression, anxiety, and weight concern scales (PHQ-9, GAD-7, and WCS), as well as therapeutic alliance measures. New pilots can follow this example: established clinical methods, results published in plain language, and external review to strengthen credibility. Effectiveness also includes clarity about what the AI is not effective for (e.g., crisis intervention or complex diagnosis). Transparent reporting of both strengths and limitations makes it easier for clinicians to decide how and when to use the tool, reducing the risk of overpromising. This is true for patients as well. When working with AI in mental health, ScienceSoft typically recommends clearly communicating a chatbot’s limitations and periodically reminding users that, however evidence-based, it is not a replacement for a human therapist.

    One of the unique contributions of the READI framework is its attention to engagement. In mental health, the way patients use the tool is often just as important as what the model says. Too little engagement may indicate no real effect, while too much could foster dependency or discourage human interaction. READI suggests defining both lower and upper bounds of “healthy” use, then monitoring real-world behavior against those thresholds. Organizations may want to flag patients who disengage after the first session or those who spend hours per day with the chatbot. The point is tying engagement to clinical outcomes, not just logins or click counts, to ensure the tool doesn’t become a distraction or crutch. 

    Implementation ties everything together. Even the best-designed tool can fail if it doesn’t fit real-world clinical workflows. Several recent resources help operationalize this principle. NIST SP 800-218A outlines secure development practices that reduce the risk of vulnerabilities undermining deployment. NIST’s Generative AI Profile adds lifecycle guidance, encouraging teams to test and monitor models over time. Meanwhile, the Coalition for Health AI’s Responsible AI Guide offers scenario-based checklists and documentation templates to support more consistent oversight. None of these frameworks replaces the hard work of tailoring a system to a specific clinical setting, but they provide scaffolding that can make implementation more deliberate and less ad hoc.

    Where Generative AI Fits in the Mental Health Care Journey

    Generative AI has already proven efficient in documentation and workflow support. What’s emerging now is a different challenge: applying these systems responsibly in therapeutic contexts where the stakes are higher. Mental health stands out as one of the earliest fields where the leap to measurable patient outcomes is beginning to take shape.

    There is a very real opportunity for executives here, but it will require discipline: careful pilots, transparent governance, and a willingness to integrate both technical and ethical guardrails. Generative AI is not a replacement for clinicians, but with the right design and oversight, it can responsibly extend access where clinician shortages are most acute.

    About Hadeel Abu Baker

    Hadeel Abu Baker is a Senior Healthcare IT & AI Consultant at ScienceSoft with over 15 years of experience. She collaborates with clinicians, data scientists, and developers to align AI use cases with measurable objectives, define acceptance thresholds, and plan for monitoring and change management. Hadeel’s working knowledge covers ML/NLP evaluation concepts, data quality controls, pipeline handoffs, and driftaware operations, with privacy and security by design for HIPAA- and GDPR-regulated environments.

  • From Documentation to Decision-Making: How Technology Supports Modern Healthcare

    From Documentation to Decision-Making: How Technology Supports Modern Healthcare

    Image credit: Pexels

    Healthcare has always run on two things at once: the care a clinician gives and the record that care leaves behind. One happens in the room, face to face, in the space of a few minutes. The other happens afterward, in the quiet time that most clinicians no longer have much of. 

    For years the second half of that job was treated as an afterthought, something to be squeezed into gaps between patients or carried home at the end of a long day. That view has changed. The record is now the foundation for nearly every decision that follows, and the tools that shape it have become part of how good care is delivered rather than a chore attached to it.

    Recording Care Without Losing Time

    Every consultation leaves behind a written account, and that account has to be built somewhere in a day that is already full. Medical dictation is where the strain shows most clearly, because speaking the details takes moments while turning them into a usable note takes far longer. 

    Speech-to-text software closes that gap by producing the written version at the same speed the clinician talks. A practice that wants the file complete before the next patient walks in can try OpenWhispr for medical dictation and spend the saved time reviewing rather than typing. 

    The Weight of Paperwork in Everyday Practice

    Ask almost any clinician what wears them down, and the answer is rarely the medicine. It is the volume of writing that surrounds it: histories, plans, follow-up instructions, referral letters, insurance justifications, and the endless small confirmations that keep a patient’s file accurate. Each item is reasonable on its own. 

    Together they take up a share of the working day that few people outside the profession would guess at. Time spent writing is time not spent listening, and the effect is felt by patients as much as by staff. A visit that feels rushed is often a visit shortened by paperwork waiting at the other end of it.

    Turning Patient Information Into Better Choices

    Once information is recorded well, it becomes useful in ways that go beyond a single appointment. A complete, accurate file lets a clinician see patterns over time: a symptom that keeps returning, a treatment that never quite worked, a change that lines up with something else in the history. Good records support good judgment, and poor records quietly undermine it.

    This is where documentation stops being administrative and starts being clinical. A note written carefully today is the evidence someone relies on next month, possibly a colleague who has never met the patient. The quality of that note shapes the quality of the decision that follows it. 

    Keeping Private Conversations Private

    Patients say things in a consultation room that they would not say anywhere else. That trust is the basis of the whole relationship, and any tool that touches clinical information has to respect it completely. Confidentiality is not a feature to be added after the fact. It is the first requirement, and anything that fails it fails entirely, however useful it might be otherwise.

    Practical questions matter here. Where does the information go? Who can reach it? How long is it kept, and who decides when it is deleted? Teams that ask these questions early, before a tool is embedded in daily routines, avoid difficult conversations later. 

    What Good Technology Feels Like to Use

    The best clinical tools share a quality that is hard to describe but easy to recognize. They disappear. They do not demand attention, announce themselves, or require the user to remember a sequence of steps. They fit into the rhythm of the day so naturally that people stop noticing them.

    Reliability is a large part of this. A tool that works nine times out of ten is not a tool anyone can lean on, because the tenth failure lands at the worst possible moment. Speed matters too, though not in the way marketing usually suggests. What clinicians need is not a system that is fast in ideal conditions, but one that behaves the same way on a busy afternoon as it did during the trial.

    Where Careful Judgment Still Leads

    Technology in healthcare is at its best when it handles the mechanical parts of the work and leaves the thinking where it belongs. Software can organize information, surface it quickly, and take the friction out of recording what happened. It cannot weigh a patient’s fears against the clinical picture, notice the hesitation behind an answer, or decide what matters most in a situation that does not fit the usual pattern.

    That division is worth protecting. The purpose of every tool in a clinic is to return time and attention to the person who trained for years to use them well. When technology does that job properly, documentation stops competing with care and starts supporting it, and the decisions that follow are made by someone who had the time to think clearly.

  • Immunology Startup ai3Bio Aims to Redefine What It Means to Reset the Immune System

    Immunology Startup ai3Bio Aims to Redefine What It Means to Reset the Immune System

    Immune reset has become a particularly active area of immunology R&D as companies develop therapies intended to eliminate disease-driving immune cells, enabling the immune system to start anew with cells that don’t attack the body. This growing field is still taking shape, but many of the approaches involve reprogramming one type of immune cell to pursue and deplete a different type of immune cell that’s driving autoimmune disease.

    Startup ai3Bio has a more straightforward strategy: tap into a built-in cellular pathway that leads pathogenic cells to self-destruct. The Watertown, Massachusetts-based company is now out of stealth, revealing its science along with $48 million in financing to support a pipeline that could start its first tests in humans next year.

    Immune reset is like a blank slate — give the immune system the opportunity for a fresh start with new cells that have no memory of attacking healthy tissue. But this approach also means eliminating protective antibodies built up over a patient’s lifetime, everything from childhood polio vaccination to this season’s flu shot. Ai3Bio aims for a more precise approach that doesn’t sacrifice a patient’s existing protections.

    “This strategy does not eliminate your pre-existing memory T cells that would be specific for [cytomegalovirus], flu, and all the other things that you want to maintain defense against,” said Jonathan Kagan, ai3Bio’s’s scientific co-founder. “We’d like to position ourselves as a very nice example of something that folks often champion but rarely achieve, and that is precision therapies.”

    The startup’s first target is Th17 cells, a type of helper T cell that fights infections. While Th17 cells are key for immune responses, excessive activity of these cells leads to autoimmune disease. Medicines are already available to address IL-17, a signaling protein secreted by Th17 cells. Novartis’s Cosentyx, Eli Lilly’s Taltz, and Bimzelx from UCB are all blockbuster-selling IL-17 inhibitors approved for several immunological indications. These monoclonal antibodies block the signaling protein but they don’t stop immune cells from churning out more of it, so the therapies must be taken chronically. Ai3Bio’s approach could offer the advantage of stopping IL-17 at the protein’s source, said CEO Steven Altschuler.

    Ai3Bio’s therapy consists of a lipid nanoparticle (LNP) that delivers messenger RNA with instructions that trigger cell death. This therapy finds its way to pathogenic Th17 cells with the guidance of a targeting antibody designed to bind to CD161, a protein overexpressed on these cells. When the therapy reaches its destination, mRNA activates an immunological pathway called cGAS-STING. For nearly 20 years, drug hunters have been researching ways to hit this pathway. So far, there are no FDA-approved drugs that target it.

    [The following two paragraphs updated to clarify the origins of ai3bio.] Ai3Bio’s name references three disciplines: advanced immunology, autoimmunity, and artificial intelligence. The company itself is the combination of technologies from two startups, Corner Therapeutics and Novasenta. Kagan, who holds positions at Harvard Medical School and Boston Children’s Hospital, was the scientific co-founder of Corner, a developer of immunotherapies for cancer and infectious diseases. Novasenta was a drug discovery startup launched by UPMC in 2021.

    Corner remains a standalone company; its autoimmune technology, including its experience with LNPs, was combined with Novasenta. Additional research showed that targeting the STING pathway in T cells would lead to cell death. Novasenta’s AI technology platform for identifying druggable targets led to the development of the CD161-targeting antibody that ai3Bio is using to go after Th17 cells.

    “We’re not delivering a grenade into the cell,” Kagan said. “We are effectively delivering instructions to the cell to kill itself or self-destruct.”

    Ai3Bio’s approach offers a potential safety edge compared to other immune reset strategies. Companies such as Cabaletta Bio and Kyverna Therapeutics are in the camp approaching autoimmune diseases with CAR T-cell therapies made by the ex vivo engineering of a patient’s T cells. Pharmaceutical companies are joining the immune reset chase with business deals. Over the summer, Johnson & Johnson began a partnership on a Sail Biomedicines therapeutic candidate that reprograms T cells in vivo, getting them to target pathogenic B cells. Other big pharma companies that have struck deals for in vivo cell therapies include AbbVie, Bristol Myers Squibb, Gilead Sciences, and Eli Lilly.

    Whether a cell therapy is produced in a lab or in the patient’s body, one known complication is an excessive immune response called cytokine release syndrome (CRS). Cell therapies eliminate disease-driving cells by breaking them open. The resulting release of cellular contents can trigger immune responses, such as CRS.

    Kagan said ai3Bio’s approach is naturally immunosuppressive, eliminating the bad-acting cells in a way that does not come with the risk of CRS. There are also manufacturing and logistical advantages. Engineering cell therapies from a patient’s own immune cells involves multiple steps. Furthermore, patients must undergo a preconditioning drug regimen to prepare for the therapy — a step that wipes out the immune system’s memory of its past protections. Altschuler said ai3Bio’s drug can treat patients in in a single step. Without the need for any preconditioning, infusion of the startup’s LNP-delivered therapy leads to self-destruction of the pathogenic cells.

    Eliminating T cells from diseased tissue typically leads to rapid replenishment of those cells. In ai3Bio’s animal testing, data indicate its therapy depleted inflammatory T cells, Kagan said. He added that ai3Bio’s approach also starts a process that prevents helper T cells from differentiating into Th17 cells, which goes further to achieving the immune reset goal. There’s more. Results from tests in monkeys indicate the therapy goes beyond the blood, leading to deep depletion in places such as the spleen and lymph nodes. That’s important because these are regions of the body that are difficult to manipulate immunologically, Kagan said.

    Immune reset is hoped to provide patients with a long-lasting, perhaps even a one-time treatment. Kagan said the durability of ai3Bio’s approach still needs to be shown in humans. Ai3Bio aims to pursue clinical testing in several immunological disorders starting with autoimmune diseases of the liver, Altschuler said. He noted that infiltration of Th17 cells into the liver drives primary sclerosing cholangitis, primary biliary cirrhosis, and autoimmune chronic active hepatitis — all indications with limited treatment options.

    The new funding behind ai3Bio, a Series A financing, was led by founding investors Ziff Capital Partners, which was an investor in Corner, and UPMC Enterprises, the investment arm of UPMC that was a financial backer of Novasenta. The new round also includes support from Cockrell Interests and Tanis Ventures.

    With ai3Bio now out of stealth, the startup will look to bring multiple programs to the clinic in the next two years, Altschuler said. He estimates the current financing will last into the second quarter of 2027, so ai3Bio will need more money. While the surge in immunology research and dealmaking makes immune reset competitive, Altschuler pointed out that nearly all of these deals involve B cell-focused therapies. Ai3Bio’s approach could also apply to B cells, but Altschuler said that for now, the startup aims to stand apart from the crowd.

    “While there are many strategies out there to treat autoimmune diseases, we would be one of the only that are in the business of actually resetting the T cell repertoire,” Altschuler said.

    Image by Flickr user NIAID via a Creative Commons license

  • Trump’s ACA Fraud Crackdown: Experts Urge Going After Bad Actors, Not Patients

    Trump’s ACA Fraud Crackdown: Experts Urge Going After Bad Actors, Not Patients

    Addressing fraud, waste and abuse in healthcare has been a major focus of the Trump Administration, particularly with the creation of the White House Task Force to Eliminate Fraud. Last week, the task force took a rather aggressive tactic, announcing that it will cancel 315,000 unauthorized enrollments covering more than 760,000 individuals in the Marketplace. The move, however, is being criticized by many in the medical industry.

    The administration anticipates that this will return about $2.2 billion in taxpayer-funded subsidies.

    “We are shutting down unauthorized Marketplace enrollments and returning approximately $2.2 billion in taxpayer-funded subsidies,” said HHS Secretary Robert F. Kennedy, Jr., in a statement. “CMS is strengthening safeguards, pursuing bad actors, and holding agents and brokers accountable when they break the rules. Under President Trump, HHS will protect Americans’ health coverage and ensure taxpayer dollars reach the people they are intended to serve.”

    One healthcare expert argued that while there’s a need to address fraud in the Marketplace, patients shouldn’t be the ones punished.

    “I agree we have to be going after bad actors, but we can’t be going after the patients,” said Dr. Adam Brown, an emergency physician and founder of ABIG Health.

    Brown emphasized that these efforts can’t be looked at in isolation. The enhanced ACA premium tax credits expired at the end of 2025, increasing premiums for many Marketplace enrollees. In addition, the Trump administration is implementing Medicaid work requirements that states generally must begin by 2027.

    “If you look at these things in isolation, you have a tendency to anchor to, ‘Well, that’s not a lot of people,’ or ‘I’m sure a lot of those individuals that are within that 760,000 number are not real individuals,’” Brown said. “But that all said, when you kind of look at all of these pieces of the puzzle, it makes me question: Are we trying to dismantle some of the important social service safety net type of programs in the country that so many people depend on, without a very clear alternative right now that’s affordable that gives them the necessary access?”

    Brown urged CMS to establish a formal process for reinstating people who were wrongly disenrolled. He also called on Congress to extend the ACA tax credits.

    Families USA, a patient advocacy organization, also spoke out against the decision.

    “Once again, the Trump administration is using alleged fraud accusations as a political smokescreen to double down on what they are actually doing: taking health coverage away from hundreds of thousands of people,” said Anthony Wright, executive director of Families USA. “Real fraud should be stopped, especially dishonest brokers who sign people up without their knowledge. Previously, anti-fraud policies and procedures banned those brokers, but this administration reinstated them. Now families, not bad actors, are paying the price.” 

    This comes as recent research from the National Bureau of Economic Research found that the broader implementation of the ACA was associated with an estimated 20% to 30% reduction in mortality among people who were uninsured before the law.

    With the administration’s decision to remove 760,000 people from ACA coverage, it’s important to note that not all of those people will become uninsured, noted one of the paper’s authors, Robert Kaestner, research associate at the University of Chicago. 

    “The majority of them are going to have access to other types of health insurance… So 250,000 people who might end up uninsured out of a country of 333 million — that’s not a big change, but still, it’s 250,000 people potentially without health insurance. That’s a very serious consequence,” Kaestner estimated.

    Photo: illustration, Getty Images

  • NIH rolling out streamlined website to help public find information more easily

    NIH rolling out streamlined website to help public find information more easily

    Finding information from the National Institutes of Health about human health, disease, and biomedical research is about to look a lot different. On Monday, the NIH will unveil a new version of its website that shifts attention away from individual institutes and centers and towards eight thematic hubs focused on health, research, data, clinical studies, rare diseases, technology, cancer, and grants.

    Agency officials say the redesign — which is part of an ambitious project to consolidate the NIH’s digital footprint — is intended to streamline what was a sprawling and fractured information ecosystem, requiring users to understand the NIH’s organizational structure, into an intuitive experience that more closely reflects what type of information people seek out most often. 

    The goal, said Amanda Fine, NIH deputy director for public affairs, is “to make trusted NIH information across the agency easier and faster to find.”

    The beta version, which was soft-launched this week, is still under development and will continue to evolve in the coming months, NIH officials told STAT. Some functions, including search, do not yet appear to be operational. During this transition period, NIH’s existing websites will remain available. They will be sunset on a rolling basis “as critical and mandated content is verified and redirects are put in place,” Fine told STAT.

    Researchers who study science communication and science misinformation say the overhaul is a welcome development. “It was badly needed,”said Kathleen Hall Jamieson, a professor of communication and former director of the Annenberg Public Policy Center at the University of Pennsylvania. “Trying to find something on the old website required the skills of an Egyptologist.”

    Over the past few decades, the NIH’s digital footprint had ballooned to include more than 700 separate websites — often with different, non-connecting backend architectures and hosting platforms — stretching across millions of webpages. Information was duplicated across five or six locations, sometimes appearing in slightly different configurations. Its potential for creating confusion became apparent during the Covid-19 pandemic, when the public turned to the NIH and other federal science agencies for guidance and information about the fast-moving public health crisis. 

    “It became a dramatic illustration of a dysfunctional website whose dysfunction wasn’t evident pre-Covid,” said Hall Jamieson. 

    Spurred by the pandemic, the NIH began to develop its first-ever five-year strategic communications plan in 2022 under President Biden. Working groups made up of more than 70 staffers from communications offices spread across NIH’s 27 institutes and centers came up with a plan to streamline the hundreds of NIH-owned websites to just one per institute. This massive undertaking was set to be phased over five years, starting in 2025. 

    That plan, which was never published but which was obtained by STAT, was scrapped when the Trump administration came in and fired hundreds of communications staffers as part of a government-wide reduction in the federal workforce. As a result of the layoffs and mass cancellation of contracts in early 2025, millions of NIH websites have been effectively frozen for nearly 18 months. That created a sense of urgency for the remaining dozen or so communications employees tasked with pushing forward website consolidation under the new administration.

    Fine said her team worked to develop a data-driven process to better understand the path people take to NIH websites and how they navigated them once there. That helped them identify where people were getting stuck and the most highly sought after and frequently accessed information. The content on the new site is taken directly from health information from existing NIH websites, Fine said.

    The consolidation, once complete, will reduce the number of NIH-owned websites from more than 700 to a single, fully connected web environment.

  • What it’s like to wait for the call from the Nobel Prize committee

    What it’s like to wait for the call from the Nobel Prize committee

    Some 20 years ago, Mary-Claire King was asked to hold a seminar at the Karolinska Institutet in Stockholm. 

    The invite, the geneticist soon learned, was code for: You are being considered for a Nobel Prize. She traveled to Sweden, held the seminar, then spoke about her work with interested experts who she later understood to be the prize committee. 

    She couldn’t have been too surprised: Her work has saved hundreds of thousands of lives, and changed cancer therapy. 

    In 1994 and 1995, King, then a professor at the University of California, Berkeley, showed that breast and ovarian cancer could be hereditary, and identified that mutations in the BRCA1 and BRCA2 genes dramatically increased the risk of developing breast and ovarian cancer. 

    There is actionable power in this knowledge: Women who test positive for the mutations can have preventive mastectomies, or get their ovaries and fallopian tubes removed. Many have decided to do so, and preventive surgeries have reduced cancer mortality for thousands of women. 

    Naturally, when Nobel Prize predictions are made, King’s name is often on the list. Ahead of this year’s announcements, starting with the medicine and physiology prize on Monday, STAT spoke to her about what it feels like to be a finalist of sorts in the highest-profile intellectual competition in the world. Now 80 and at the University of Washington, she also talked about her work, her advice to young women scientists, and her favorite mantra — which she invented. 

    This interview has been edited for clarity and length.

    So, the Nobel announcement is next week.

    Oh, my God, it’s next week already. I can’t believe it. 

    Your name has been among the possible winners for many years. Do you have a routine? Do you set an alarm to check the winner? 

    I think if it were at any time other than truly the middle of the night, I might. But I’m on the Pacific Coast, so it is the middle of the night. 

    It’s not worth setting an alarm for 2 a.m. in the morning?

    It’s not that it’s not worth it! It’s just that it’ll still be there, and the chances of any one year are extremely low. 

    Still, it’s hard to predict.

    That’s true. The year that Katalin Karikó won [with Drew Weissman for work that led to the mRNA Covid vaccines], I think, was the most predictable. I mean, she saved the planet, it’s hard to argue that anything else could have surpassed that. It was the world’s largest experiment. But my guess would be GLP-1 this year. 

    It must be an interesting process. It’s certainly a tiny filter, and there’s a lot of stochastic features involved. 

    Do you remember the first time that you heard your name among the possible winners?

    It was when they invited me to the Karolinska Institutet to give a seminar. They were very open about saying that they do this with people who are under consideration, and that anyone in this position should bear in mind that these things take years to sort through, and they just want to have the information and be able to talk to us personally. 

    I had a lovely time. I gave a seminar. I interviewed with what I’ve now recognized in retrospect are the members of the committee, and it was fine. There was no feedback.

    That was the first time I realized that it was even a possibility.

    What were the discussions like?

    It varies a lot within the course of the visit. I think it’s largely about the personality of the individual and their belief in the work and their knowledge about the work. In my case, the individual discussions ranged from totally fascinating with someone who totally understood the work … and then another person who was very open about being skeptical about how genetics could possibly solve such a problem. He was extremely polite, absolutely delightful, and charming — but very skeptical. 

    In a way it’s like going for any other interview: You just have to be prepared for a variety of levels of skepticism and questioning. It was an interesting experience. 

    What does it feel like to know your work is so impactful that not only does it get noticed by the Nobel Committee, but becomes common knowledge? 

    I don’t think that scientists are necessarily aware of how important the positive impact that we have on other people is. It just boosts you. It just makes you feel so much stronger and so much more confident and so much more able to continue in rough patches, of which there are of course many. 

    It’s been a half-century now that I’ve been working on this, and I think when it comes up it’s more like a secret handshake. Thousands of women, or their husbands, fathers, brothers write to me for clarification, for information. It’s a huge network of women all over the world, multiple languages which I don’t speak, and we work together on this. 

    I got a letter a few years ago, which I’ll treasure forever, from a woman. It was a physical letter, just a note on a little piece of paper and with a photograph of her and her daughter. She said, “My mother died of breast cancer when I was 14. It was way before testing. I’ve since discovered I have a mutation in BRCA1. I’ve had the necessary surgeries. I have not had breast or ovarian cancer. As you see, my daughter just graduated from high school: I thought you’d like to know.” What can you say? I was in tears. I’m in tears telling you about it. 

    So that’s it, it’s a secret handshake, and we all know what it means, and we can help each other out. 

    You went into a line of work that didn’t have many women in it, and did work that benefited, first and foremost, women. You encouraged female scientists, and advocated for greater diversity in the field. What do you think of the state of women in research now?

    An enormous amount has changed for the better. We are a far greater proportion of the research pool. We’re a far greater proportion of senior faculty. We’re a far greater proportion of policymakers in the health arena. 

    What hasn’t changed is that the time of a woman’s life when she has small children is the same as the time of her life when her career is getting off the ground, and until we accept that responsibility as a society and have structured high-quality subsidized childcare, it’s not gonna be equal. It’s simply not. 

    But over the years, generation after generation, what I tell younger women is that careers are long, and children grow up quickly. So it’ll be OK if you just do what you can now. But as one physician-scientist said to me, “All that’s true, but while they’re growing up, there’s a lot going on [in the lab].”

    What is your advice for young scientists — perhaps women — looking to make a big discovery, something that can change the course of medicine, as you did?  

    What’s most important is picking problems that are important to you. That will, for many of us, be problems that are important to many people — but they have to be important to you, they have to involve ways of thinking and experiment approaches that appeal to you, that you like doing every day. 

    I think that’s the way to go because these things have a way of growing. What begins as a small problem becomes a larger problem and a larger problem and a larger problem, and if you still like it, and if it still seems plausible, stick with it and and accept the encouragement from people who care, both people who might be affected by it and, especially at the beginning, people that you see every day, that are right there in the lab with you. 

    When did you start realizing how major your discovery was going to be for medicine? 

    It was quite abrupt, because the whole time I was working on the problem, it was a 17-year period. I came out of evolutionary biology and genetics, and then when it was clear that that way of thinking applied just fine to proving that breast cancer was inherited, and furthermore there was a gene, and furthermore, here’s where it was — that was a huge creative leap. And as soon as that happened, all sorts of people who cared about breast cancer from a medical perspective as well as genetics realized its importance. And that’s when I did too.

    You have done a lot of work since the BRCA discoveries. What is it like, emotionally and intellectually, to continue doing research after you’ve found something this big? 

    It’s something I think about a lot. One can apply the same way of thinking with new tools to problems that are as old as people but haven’t been tackleable before. My favorite mantra — which I confess to having invented — is, genetics is a way of thinking, genomics is a set of tools, so then problems that one can tackle are ever more challenging. The kinds of approaches that we can use now are just fabulous. We can ask genetic questions that we could not have asked even a decade ago, or three years ago. 

    And then, within the area of inherited predisposition to cancer, where do I see myself having a long-term niche? I think that’s in two ways. One is a kind of public-facing way. But the other is in what I’m really good at, which is figuring out how to use genetics in really tricky areas, and we still do that a lot.

    When this [the BRCA discovery] clearly became a major issue in medicine, and far greater than I would have ever guessed, Bernie Fisher, who was the father of modern breast cancer treatment, said to me: “You’re not going to be able to control this. You need to, on the one hand, let it go, but on the other hand, be there for people when they have questions.” 

    What are you working on now in your lab? 

    I have a nice group, and we’re all all involved in all our projects. We’re working on de novo mutations in schizophrenia, we’re working on expanding repeats in bipolar disorder, we’re working on cryptic mutations, structural variations leading to inherited predisposition to breast and other cancers. We’re working on congenital abnormalities. 

    It’s a wide swath.