Equity, technology, and costs top of mind for life science’s leaders

Physicians, researchers, CEOs, reporters, and more gathered in downtown Boston Wednesday night to celebrate STAT’s 2024 STATUS List, which features 50 leaders in the life sciences. Members of this year’s list (and a few past list members) spoke about what issues in their fields — ranging from investment to clinical research to bedside treatment — need to be prioritized in order to improve health care across the U.S. and the rest of the world.

Equity and inclusion

Achieving true equity in medical science “requires us to divest our research from the ivory towers of elite institutions,” said 2023 list member Jonathan Jackson, executive director of Community Access, Recruitment, and Engagement Research Center at Massachusetts General Hospital and Harvard Medical School. Too often, he said, researchers and advocates bring “the same solutions to the same institutions” who don’t prioritize the needs of marginalized populations.

Stuart Orkin, a professor at Harvard Medical School, similarly called out powerful institutions, saying that the National Institutes of Health and the pharmaceutical industry underinvested in sickle cell research for decades. He has become what he called “an accidental equity spokesperson,” after performing research that offered the blueprint for Vertex’s gene therapy for sickle cell disease, which disproportionately impacts Black people.

As health equity gains attention, though, it can risk becoming a buzzword. Monica McLemore, a professor and interim director of the Manning Price Spratlen Center for Anti-Racism and Equity at the University of Washington and editor of the journal Health Equity, pointed out how fellow leaders on the STATUS List used the phrase without giving it a definition.

Sometimes, disparities in research are a problem of conducting studies “about” people, rather than in collaboration with affected communities, many said. Getting communities involved in research is critical to combat disparities.

“In academia, we often go out and find problems to solve,” said Rory Cooper, director of Human Engineering Research Labs at University of Pittsburgh, who works to improve mobility for people with disabilities. “But if you actually listen to people, there are many, many problems to solve.”

Technology 

It’s impossible to talk about health care equity without talking about the technologies being built to address it. But leaders at the event said that technology isn’t a magic solution to the problems in health care.

“People think that disability solutions are a technical problem. They’re not,” said Joshua Miele, principal accessibility researcher for Amazon. Rather, he said, they’re social and equity problems that technology can sometimes help to address — when it’s built by and with disabled people.

Ida Sim, chief research informatics officer at the University of California, San Francisco, hears a lot about the potential of artificial intelligence to predict disease. But she wants AI that can assess an individual patient’s risks to help them make decisions. Take a woman who can only take one day off for a doctor’s appointment, she offered. She might need a mammogram, a bone density scan, and a colonoscopy — but if she’s forced to prioritize, which test should she get?

“Predictions are great, but I think there’s a lot more we can do,” said Sim.

When asked about what topics in his field are overlooked, Peter Lee, corporate vice president for Microsoft Research & Incubations, let generative AI answer for him, in the form of a chatbot trained to mimic his own communication style. “The erosion of public trust in science,” the chatbot offered.

The real Lee wouldn’t have given the same answer, he said later: Instead, he would have prioritized a more “urgent and expansive” approach to bias in AI, grappling with the possibility that perhaps the bias baked into large language models can’t be repaired — and instead needs to be actively managed.

Costs and finances 

Nobody likes it when health care costs too much, said Behzad Aghazadeh, a prominent biotech investor, noting that it may be the one thing everyone in the room and in the health care industry could agree on. Nobody has ever gotten votes by saying, “I will increase drug prices,” he joked.

Patients are too often blindsided by outrageous medical bills, agreed Cynthia Fisher, a price transparency advocate. The health care market should function like every other market, where the consumers — patients — have all the information at their disposal, she said. “Every time we get care, we first have to sign a blank check.”

But some leaders in the room argued that in order to make progress in science and medicine while keeping care affordable and accessible, it needs to be treated like a business. “This sector cannot work if we prevent acquisitions,” said Aghazadeh. “We also serve a purpose.”

Chris Viehbacher, Biogen’s president and CEO, sees the importance of supporting innovation, inclusion, and affordability, but also recognizes that it’s difficult to manage all at once.

“One of the hardest words in management is the word ‘and,’” he said.

Public perception and trust

Holden Thorp, the editor-in-chief of Science journals, writes a lot about research integrity. It’s a critical issue today as sleuths and independent fact-checkers continue to find errors in large swaths of research. (Elisabeth Bik, one of the sleuths, was another STATUS List member.) But too often, attention goes to individual cases and not the overall, systemic issues, Thorp said.

“The institutions are really shunning their responsibility in acknowledging that they have a problem,” he said. “They’re giving us the bad apple theory,” rather than collaborating to ensure clear and accurate communication, even about errors.

Others agreed that communication plays a key role for public health.

“There’s an astounding amount of misinformation in the public and the press,” especially regarding gender-affirming care for trans people, said Alex Keuroghlian, director of education and training programs at The Fenway Institute, which focuses on LGBTQ+ health research and policy. Combatting that misinformation is key to ensuring people have access to the care they need, they said.

Melissa Simon, a professor at Northwestern Medicine, hopes to see science media embrace joy while fighting misinformation. “Fundamentally, a little bit of joy instead of doom and gloom all the time in science reporting may help bridge trust.”