THURSDAY, OCTOBER 17, 2024

How Groundbreaking NIH Research is Expanding to Birth-to-Four-Year-Olds

For nearly the first decade of the National Institutes of Health’s “All of Us” Research Program — aimed at increasing diversity in genetic research — a major component was missing: kids.

“Children are approximately 24% of our population in the U.S. and 100% of our future,” Dr. Sara Van Driest, director of pediatrics for NIH’s All of Us Program, told hosts Mark Masselli and Margaret Flinter. “In order to provide them with the very best care for the future and have them benefit from this resource, we need to include them.”

The journey is personal for Katrina Yamazaki, Ph.D., principal investigator for Community Health Center, Inc., in Connecticut, a partner organization in All of Us. Yamazaki and her husband adopted three boys through the foster care system.

“We don’t know a whole lot about their … biological families’ medical history,” Yamazaki said. “The idea that this program will one day be able to provide some of [that] missing information to me and my husband, in order to become health advocates for our children is really important to me.”

The NIH in August began limited enrollment in the program for children age 4 and under.

“We started with that youngest age group so we can follow them the longest,” Van Driest said.

Community Health Center, Inc., for its part, is partnering with community-based organizations such as the Hartford Public Library to build trust, raise awareness of the project and make a fun atmosphere through activities.

All of Us intends to change what might be seen as a “one-size-fits-all” approach to health care. It aims to encompass 1 million individuals of diverse backgrounds but doesn’t focus on particular diseases or conditions, Van Driest said. The diversity, too, goes beyond culture, touching geography, age and socioeconomic status.

“One of the goals of research is to connect the dots,” she said. Given the scope of the project, “there will be so many dots that we’ll be able to connect,” Van Driest said.

 “If we fail to include a group of individuals or an aspect of diversity, we miss out on that uniqueness. That limits us in what we’re able to understand about humanity in general,” she said. “It also limits research and learning about that group of individuals. And it limits downstream how clinicians can care about individuals and give them the very best possible outcomes.”

THURSDAY, AUGUST 22, 2024

NEJM’s First AI Editor: Yes, AI is Here to Stay

Some patients are concerned about how far artificial intelligence (AI) is creeping into the exam room. But AI has been part of health care longer than most realize, according to Dr. Isaac Kohane, a groundbreaking Harvard University professor.

Kohane is the editor-in-chief of the New England Journal of Medicine’s first publication devoted to AI. He tells hosts Mark Masselli and Margaret Flinter that “In the 1980s, automated interpretation of an [echocardiogram] would have been considered AI. Now it’s the ability to look through a patient’s record and come up with a differential diagnosis, a second opinion, a therapeutic plan.”

Kohane shares a success story of a mother whose child had difficulty walking and chewing, suffered from headaches and had seen more than a dozen doctors over many years, with no diagnosis. After one doctor recommended a psychiatric course of action, the mother fed the reports from various past medical visits into a generative AI program, which suggested tethered cord syndrome.

Cases like this can represent AI’s potential, says Kohane. But the nascent technology raises issues of bias. “You can run tests on these AI programs and say, ‘Would you propose that diagnosis more often if this was an African-American or an Indian-American?’ … And you can adjust these programs,” Kohane says. The exciting part is that the adjustment would be easier than undoing even unconscious bias among hundreds of thousands of health care professionals, he explains.

THURSDAY, AUGUST 15, 2024

Nuance can help health field regain public trust: AcademyHealth CEO

Dr. Aaron Carroll raises eyebrows with statements that highlight contradictory health advice: “‘Eggs are going to kill you because of cholesterol’ — ‘oh, it actually doesn’t matter. Eat as many eggs as you like.’ ‘Red meat will kill you.’ ‘Oh no, read meat can be part of a diet.’ ‘Drink no alcohol’ … ‘Oh, no no. Drinking red wine is perfectly healthy.’”

Dr. Carroll has devoted his career to advocating for scientific and research communities need to improve how they discuss nuance, especially in health. Dr. Carroll, serving as CEO of the AcademyHealth, says “science is portrayed as binary — positive or negative — and that can breed mistrust from the public.”

“The way that we discuss nutrition and food [can] burn people’s belief in science, in that it feels like people are told one or the other,” Dr. Carroll tells “Conversations on Health Care” hosts Mark Masselli and Margaret Flinter.

For most people, ramping up or cutting out consumption of one particular food “can add a tiny bit of risk here or there. But the extremes that we are often sold, one way or the other, about what you should and should not eat are often not really well-supported by science,” he says.

It’s not that new data disproves old research, he says. But both add up to a more complex picture. “When you describe things in absolute terms … it creates a climate where people don’t trust exactly what you’re saying.”

Despite the constantly changing nature of science, nurses and doctors are still consistently held in high trust, Dr. Carroll says. One way to add nuance to public discourse is to use trusted voices to help people understand what questions to ask when they hear new information: Pre-buttal, as opposed to rebuttal, as he puts it. “[That] is much more powerful than trying to change their minds after they’ve heard things that are just not true.”

THURSDAY, AUGUST 8, 2024

Self-healing joints? Perfect surgeries? Your tax $$ could make it happen

The director of the Advanced Research Projects Agency for Health (ARPA-H) knows the eyes of the nation are on her. Renee Wegrzyn, Ph.D., leads the billion-dollar effort charged with leveraging research advances for real-world impact.

Wegrzyn talked with hosts Mark Masselli and Margaret Flinter at Aspen Ideas: Health about the agency’s initiatives, including a $100 million sprint for women’s health and creating tissue-specific delivery of therapies.

“How can we pursue some of these breakthroughs — in our case, for health — by empowering the scientists…the program managers…that have these really big ideas that are so risky that the technical sector, the private sector can’t address because there’s no proof of concept?”

She explained the process: Hire program managers with big ideas in health and give them a time frame to find solutions.

Wegrzyn said the time limit ensures they bring a sense of urgency to solving problems. In return, participants get resources to focus on technical risks.

Many of ARPA-H’s missions are cancer-centered, aimed at issues through what-if questions such as: “What if cancer surgeries were one-and-done?” “What if clinical trials evolved in the same way tumors do?”

She said, “The investments that we’ve made in cancer [include] our precision surgical interventions program. Think about reimagining the operating room suites, when a surgeon is looking into a surgical cavity and trying to remove a tumor.”

THURSDAY, AUGUST 1, 2024

95 Days to Election ’24: Analyzing the Health Care Issues

The defining health care issues in this year’s election are crystalizing with reproductive rights remaining at the top of the list. Julie Rovner, chief Washington correspondent for KFF Health News, has covered health policy fights for nearly four decades. She said, “I think this may be the first time that abortion rights drive people out to vote. The anti-abortion movement has always been the one that has been able to gin up their base, and the people who are sort of on the most extreme of the anti-abortion movement are the ones who are most devoted and…one of the reasons Republicans have courted them so assiduously is they show up and they vote.”

Rovner also weighed in on the 15 states or more states with abortion-related ballot initiatives and efforts to restrict the abortion pill mifepristone and end in vitro fertilization.

Rovner spoke to hosts Mark Masselli and Margaret Flinter on location at Aspen Ideas: Health. While the presidential race is in flux (including a change in the Democratic candidate), the core issues have remained consistent.

The hosts asked Rovner which health care question she’d most like to pose to former President Trump in a debate. “I don’t mean this in a negative way, I’d like to ask him if he knows the difference between Medicare and Medicaid, and whether he feels as strongly about preserving Medicaid as he said he does about Medicare.” She also analyzed the hurdles the Biden-Harris administration has had to date in communicating about what it sees as its health policy victories.

THURSDAY, JULY 25, 2024

JAMA’s Editor: Rebuilding Trust & Reaching More Readers

The Journal of the American Medical Association (JAMA), which was first published 141 years ago, is grappling with modern challenges as the most widely circulated general medical journal in the world. At the forefront is Dr. Kirsten Bibbins-Domingo, its relatively new editor-in-chief.

Dr. Bibbins-Domingo took the helm at a tumultuous time and has a clear vision for how JAMA should deal with equity in medicine and the public’s lack of trust in health care.

She told hosts Mark Masselli and Margaret Flinter at Aspen Ideas: Health that “I am not the keeper of trust for the journal. I am not the keeper of our focus on equity.” But she said she has installed new processes “so that we could collectively have those conversations, be more transparent around them, think about the processes that help us make sure that we are always trying to be the best that we can be.” That includes giving JAMA employees and authors a voice in discussions about equity and increasing transparency with readers.

Dr. Bibbins-Domingo also focused on how to keep JAMA connected to its current audience while attracting new audiences using an omnichannel approach, especially social media.

“I think about what JAMA and the JAMA Network have to do right now is do the core functions the same way we’ve always done it…vetting the science, making sure this is science you can trust, putting the stamp of approval in that way on it, and then publishing it. And then we have to do something that I think all journals need to do better… and that is being a modern communication vehicle,” she said.