Life sciences leaders highlight top healthcare priorities

PHysicists, researchers, CEOs, reporters and more gathered in downtown Boston Wednesday evening 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 members) discussed which issues in their fields—ranging from investments to clinical research to bedside treatment—should be prioritized to improve health care in the U.S. and across the world. improve the world. .

Equality and inclusivity

To achieve true equity in medical science, “we must move our research away from the ivory towers of elite institutions,” said 2023 List Member Jonathan Jackson, executive director of the Community Access, Recruitment, and Engagement Research Center of Massachusetts General Hospital and Harvard Medical School. Too often, he said, researchers and advocates bring “the same solutions to the same institutions” that fail to prioritize the needs of marginalized populations.

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

However, as health equity gains more attention, it is in danger of becoming a buzzword. Monica McLemore, 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 one definition of .

Sometimes research discrepancies are a problem of conducting studies “about” people, rather than in collaboration with affected communities, many said. Involving communities in research is crucial to combating inequalities.

“In academia, we often look for problems to solve,” says Rory Cooper, director of Human Engineering Research Labs at the University of Pittsburgh, who works to improve the mobility of people with disabilities. “But if you really listen to people, there are a lot of problems that need to be solved.”

Technology

It’s impossible to talk about healthcare equity without talking about the technologies being developed to address this problem. But leaders at the event said technology is not a magical solution to healthcare’s problems.

“People think solutions for disabled people are a technical problem. That’s not the case,” said Joshua Miele, chief accessibility researcher at Amazon. Rather, he said, they are social and equity issues that technology can sometimes help address – if it is built by and with people with disabilities.

Ida Sim, head of research informatics at the University of California, San Francisco, hears a lot about artificial intelligence’s potential 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 may need a mammogram, a bone density scan and a colonoscopy, but if she’s forced to prioritize, which test should she get?

“The predictions are great, but I think we can do a lot more,” said Sim.

When asked what topics are being overlooked in his field, Peter Lee, corporate vice president of Microsoft Research & Incubations, lets 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 would not have given the same answer, he later said: instead, he would have prioritized a more “urgent and comprehensive” approach to biases in AI, grappling with the possibility that the biases embedded in large language models ingrained in being able to do that. cannot be repaired – and must instead be actively managed.

Costs and finances

No one likes it when health care costs too much, says Behzad Aghazadeh, a prominent biotech investor, noting that this might be the one thing everyone in the room and in the health care industry could agree on. No one has ever gotten votes by saying, “I will raise drug prices,” he joked.

Patients are too often blindsided by excessive medical bills, agrees Cynthia Fisher, a price transparency advocate. The healthcare market should function like any other market, where consumers – patients – have all the information at their disposal, she said. “Every time we receive care, we first have to sign a blank check.”

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

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

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

Public perception and trust

Holden Thorp, editor-in-chief of Science magazines, writes extensively about scientific integrity. It’s a critical issue today as investigators and independent fact-checkers continue to find flaws in large parts of the research. (Elisabeth Bik, one of the sleuths, was another member of the STATUS list.) But too often, the focus is on individual cases and not on the overall, systemic problems, Thorp said.

“The institutions are really evading responsibility by recognizing that they have a problem,” he said. “They give us the bad apple theory,” instead of working together to ensure clear and accurate communication, even about errors.

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

“There is an astonishing amount of misinformation in the public and the press,” especially about gender-affirming care for transgender people, said Alex Keuroghlian, director of education and training programs at the Fenway Institute, which focuses on LGBTQ+ health research and policy. Combating that misinformation is critical to ensuring people have access to the care they need, they said.

Melissa Simon, a professor at Northwestern Medicine, hopes the science media will embrace joy while fighting misinformation. “In principle, a little bit of joy instead of all the doom and gloom in scientific reporting can help bridge the gap in trust.”