The pandemic-prompted social isolation, the rise of social media — with its ability to spread misinformation at the speed of light — a deeply polarized nation with a political class feeding on those divisions, and the advent of artificial intelligence technologies are all contributing factors to the plummeting of trust across institutions, government, science, media and Big Tech.
The healthcare industry is facing its own trust issues, and the topic was addressed in several sessions in the “Innovation Track” at the recently concluded SXSW festival in Austin. Here are four perspectives that panelists shared to highlight how the trust deficit can be addressed and improved.
Merck’s Red Chair Campaign
Big pharma is no stranger to the deeply negative public perception that they are powerful corporations driven purely by the profit motive with little or no consideration for patients. At SXSW, Josette Gbemudu, associate vice president of patient health innovation at Merck, one of the top 10 large pharmaceutical corporations by revenue, explained how an internal campaign has sought to always keep the patient perspective front and center in all conversations. The effort is called the “Red Chair” campaign and it appears to have launched in mid November.
“What that means is in every room within the organization, within the company, there’s a red chair, a very bright red chair. It’s a reminder that the patient’s voice is needed,” Gbemudu told the audience. “It’s a reminder that we’re all accountable to figuring out how to get those insights directly from patients and ensuring that they’re there to create their own perspective around the innovations that we’re bringing.”
She added that generating trust requires the inclusion of patient and other voices in the act of designing future technological innovation that will have an impact on them. That is essential to “truly reflect the myriad of experiences,” she said.
When moderator Brandon Pletsch, president of Europe for Real Chemistry, a healthcare communications and marketing firm, pressed her to explain further, Gbemudu appeared to hint at the public perception of the corporate profit motivation without directly expressing it.
“So I think it’s very easy, especially in sort of a corporate environment to get so fixated on some of the things that are, that from a corporate lens will mean a difference for us in terms of innovation, will mean a difference in terms of what we do as a company, but at the end of the day, why are we innovating, for what end, for reason?” she rhetorically asked. “The red chair is meant to remind people to get back to the fundamentals of making sure the patient is at the center. So as opposed to what’s good for the company, what’s good for the patient, getting back to the problem statement at hand.”
Innovation is Transparent and Invisible to All Users
As AI tools proliferate in healthcare, transparency is key to engendering trust, said Simon Nazarian, chief technology and digital officer at City of Hope, an NCI-designated comprehensive cancer center and research organization. He explained that multiple stakeholders need to understand the technology being used clearly.
“Patients and providers want to understand how, right? How is this supporting us and where is it taking us? They want to make sure that [the innovation is] human led, right? We use all of these advanced technologies to bring the right information in the right place at the right time, but we want to make sure that it’s not replacing human wisdom … ,” Nazarian said.
Humans need to be in the loop to engender trust in these new technologies, Nazarian appeared to be saying, and at the same time, technology needs to be invisible. In other words, innovations need to create a smooth workflow and experience for all concerned including patients, providers and caregivers. That is the goal of Hope LLM, an in-house gen AI tool built by City of Hope engineers leveraging multiple commercially available and open-source LLMs. The goal, at least for physicians, is to reduce cognitive burden and help in clinical decision support. While Nazarian said data has also captured the value of the LLM, he has seen great response through informal feedback from physicians.
You “get a hug in the hallway,” he recalled. “It’s like, ‘Man, this has really saved me time.’”
But it’s not just for physicians.
“The care team is more than just the physicians, right?” Nazarian commented. “It’s also all the caregivers that surround a given patient at home, right? Maybe a cousin, maybe a parent, maybe a child, right?”
And in that respect, the way he described Hope LLM was really meaningful. See video clip below.
Peer-recommended Pathways
As trust in institutions has eroded and as people turn to online sources for recommendations and even support, what peers say matters more and more. Take Reddit for instance, the online topic-based platform that allows people to communicate with scores of people (mostly anonymously) and infer the wisdom of the crowd.
“People really open up about their concerns, their fears, their health [on Reddit],” said Alex Bell, a breast cancer survivor, founder of Reddit’s R/DoIHaveBreastCancer forum and former moderator of multiple Reddit communities, during a different panel discussion that also addressed trust. “A lot of the times we don’t want to talk to our sister, or mom, or friends and they might not know what we are going through. Getting a breast cancer diagnosis when you are 32 years old – like, none of my friends knew what that was like.”
She added that each cancer can be complex, and the personalized advice that people can offer on Reddit can be truly valuable to a patient undergoing treatment or faced with a difficult diagnosis.
“With the scale of Reddit, there’s a good chance that there’s someone on there in your same situation, with your same hobbies that you are trying to maintain – the example I give is of a woman who was a big crocheter and she was worried about neuropathy in her hands and she was able to talk to another cancer survivor who loves to crochet [and she said] ‘Why don’t you try these needles?’,” Bell explained. “Doctors can’t always answer questions like that or they [i.e. the questions] don’t feel important enough to ask the doctor. You only have 15 minutes there, and you kind of rush through a little bit.”
Another panelist echoed the idea of leveraging peers to boost trust in innovations and healthcare interactions by providing an example from AA (Alcoholics Anonymous).
“If you look at an arguably non-tech model like AA, you know it has no business model, there’s no revenue, no transactions. It succeeds because people are supported by peers who have been through it,” pointed out Katie Drasser, CEO of RockHealth.org part of Rock Health, a venture capital fund, advisory firm, and research organization. “They trust that opinion and recovery rates are higher because of it.”
She then provided an example of Marigold Health, a healthtech company built around anonymous peer support for mental health and addiction recovery. RockHealth’s venture capital arm co-led Marigold’s Series A round back in June 2024. Drasser said Marigold Health uses AI to support peers and the first 2,000 patients using the platform reported a 98% recovery.
“Like small sample size, but that’s pretty impressive,” Drasser said. “And it’s because folks trust peers, but where the tech comes in is, the tech is in service of that. It’s in service of those outcomes and that trust, rather than the other way around.”
