Social isolation caused by the pandemic, the rise of social media – with its ability to spread misinformation at the speed of light –, a deeply polarized nation with a political class preying on these divisions and the advent of artificial intelligence technologies are all factors contributing to the breakdown of trust between institutions, government, science, media and big tech.
The health sector is facing his own trust issuesand the topic was discussed during several “Innovation Track” sessions at the recently concluded SXSW festival in Austin. Here are four perspectives shared by the panelists to highlight how the trust deficit can be addressed and improved.
Merck Red Chair Campaign
Big pharma is no stranger to the deeply negative public perception that they are powerful corporations driven solely by profit, with little or no regard for patients. At SXSW, Josette Gbemudu, associate vice president of patient health innovation at Merck, a top 10 pharmaceutical company by revenue, explained how an internal campaign sought to always keep the patient’s perspective at the forefront of all conversations. This effort is called the “Red Chair” campaign and it appears to have launched in mid-November.
“That means in every room in the organization, within the company, there is a red chair, a very bright red chair. It’s a reminder that the patient’s voice is needed,” Gbemudu told the audience. “It reminds us that we are all responsible for figuring out how to get this information directly from patients and ensuring that they are there to create their own perspective on the innovations we are making.”
She added that generating trust requires the inclusion of patients and other voices in the act of designing future technological innovation that will impact them. This is essential to “truly reflect the myriad of experiences,” she said.
When moderator Brandon Pletsch, president of Real Chemistry in Europe, a healthcare communications and marketing company, pressed her to explain further, Gbemudu appeared to allude to the public’s perception of corporate motivation for profit, without expressing it directly.
“So I think it’s very easy, especially in a corporate environment, to be so obsessed with certain things that from a business perspective will mean a difference for us in terms of innovation, it 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 purpose, for a reason? » she asked rhetorically. “The red chair is meant to remind people to get back to the basics, which is making sure the patient is at the center. So as opposed to what’s good for the business, what’s good for the patient, let’s get back to the problem statement.”
Innovation is transparent and invisible to all users
As AI tools proliferate in health care, transparency is key to engendering trust, said Simon Nazarian, chief technology and digital officer at City of Hope, a cancer center and NCI-designated comprehensive research organization. He explained that multiple stakeholders need to clearly understand the technology being used.
“Patients and providers want to understand how, right? How does this support us and where does this take us? They want to make sure that [the innovation is] run by a human, right? We’re using all of these advanced technologies to bring the right information to the right place at the right time, but we want to make sure it doesn’t replace human wisdom…” Nazarian said.
Humans must be informed to engender trust in these new technologies, Nazarian seemed to say, and at the same time, the technology must be invisible. In other words, innovations must create a seamless workflow and experience for everyone involved, including patients, providers, and caregivers. This is the goal of Hope LLM, an in-house generational AI tool built by City of Hope engineers leveraging several commercially available and open source LLMs. The goal, at least for physicians, is to reduce cognitive load and aid in clinical decision support. Although Nazarian said the data also captured the value of LLM, he saw a great response through informal feedback from physicians.
You “get a hug in the hallway,” he recalls. “It’s like, ‘Man, that really saved me time.’”
But it’s not just for doctors.
“The health care team is not limited to doctors, right? » Nazarian commented. “It’s also all the caregivers around a given patient at home, right? Maybe a cousin, maybe a parent, maybe a child, right?”
And in that regard, the way he described Hope LLM was truly significant. See the video clip below.
Peer-Recommended Paths
As trust in institutions erodes and people turn to online sources for recommendations and even support, what their peers say matters more and more. Take Reddit for example, the online topical platform that allows people to communicate with dozens of people (mostly anonymously) and infer the wisdom of the crowd.
“People really talk about their worries, their fears, their health. [on Reddit]said Alex Bell, breast cancer survivor and founder of Reddit. R/DoIHaveBreastCancer forum and former moderator of several Reddit communities, during another roundtable which also dealt with trust. “Often we don’t want to talk to our sister, our mother or our friends and they may not know what we are going through. Being diagnosed with breast cancer at the age of 32 – none of my friends knew what it was.”
She added that every cancer can be complex and the personalized advice people can offer on Reddit can be really valuable to a patient undergoing treatment or facing a difficult diagnosis.
“With how big Reddit is, chances are there’s someone in your same situation, with the same hobbies that you’re trying to maintain – the example I give is a woman who was a big crocheter and was worried about neuropathy in her hands and was able to talk to another cancer survivor who loves to crochet. [and she said] “Why don’t you try these needles?” Bell said. “Doctors can’t always answer questions like this, otherwise they [i.e. the questions] I don’t feel important enough to ask the doctor. You only have 15 minutes there, and you’re rushing a bit.
Another panelist echoed the idea of leveraging peers to build trust in healthcare innovations and interactions by giving the example of 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 lived it,” noted Katie Drasser, CEO of RockHealth.org which is part of Rock Health, a venture capital fund, consulting firm and research organization. “They believe that opinion and cure rates are higher because of this.”
She then gave an example of Marigold healtha health technology company built around anonymous peer support for mental health and addiction recovery. The venture capital arm of RockHealth co-led Marigold’s Series A round in June 2024. Drasser said Marigold Health uses AI to support its peers and the first 2,000 patients using the platform reported 98% recovery.
“Like a small sample, but it’s pretty impressive,” Drasser said. “And that’s because people trust their peers, but where technology comes in is that it’s in service of that. It’s in service of those outcomes and that trust, rather than the other way around.”
