I’d like to revive the spirit of the “What if health care…?” conversation, this time in the context of data and trust.
What could we build with health data if we had people’s trust?
How about:
- An algorithm to prevent suicide.
- An app to prevent addiction relapse.
- An app to help adolescents living with chronic disease take their medications, even when (especially when) their mood dips.
What if the “trust advantage” of incumbent health care institutions was erased?
The commoditization of trust is far more injurious to hotels than you might think: it’s not simply that Airbnb is more competitive on one particular vector; rather, the “trust” vector was by far the biggest priority for both travelers and hosts. Hotels could be infinitely more inconvenient, expensive, or sterile relative to your typical homestay and it wouldn’t matter. In the pre-Airbnb days travelers — and sublessors — justifiably prioritized trust above all else. In other words, the implication of Airbnb building a platform of trust is not that a homestay is now more trustworthy than a hotel; rather, it’s that the trust advantage of a hotel has been neutralized, allowing homestays to compete on new vectors, including convenience, cost, and environmental factors.
– Ben Thompson, “Airbnb and the Internet Revolution“
What opportunities does this unlock for health care?
What if, when a company loses people’s trust, they react immediately and at great cost to themselves to regain it?
In 1982, seven people died after ingesting Extra-Strength Tylenol capsules that had been maliciously injected with cyanide by an unknown killer. The manufacturer, Johnson & Johnson, responded decisively to protect people.
By withdrawing all Tylenol, even though there was little chance of discovering more cyanide laced tablets; Johnson & Johnson showed that they were not willing to take a risk with the public’s safety, even if it cost the company millions of dollars.
Case Study: The Johnson & Johnson Tylenol Crisis
What would you create if you had people’s data AND their trust? Dream big, please!
Image: Trust by Jan Mennens on Flickr.
Such a lovely can of butterflies! This isn’t a direct answer, but here are two more butterflies – one on data and trust by the National Academy of Medicine: https://nam.edu/wp-content/uploads/2020/11/Health-Data-Sharing-to-Support-Better-Outcomes_prepub-final.pdf and one that is an approach that applies evolutionary science, contextual behavioral science, and political science and economics to create communities of collaboration and cooperation: https://www.prosocial.world/
I guess these are along the lines of “How might we…?” create and maintain trust?
I was in a surgical recovery room recently (not my own) and was reminded how much of trust is normative – we know it’s tacky to look closely at other patients in recovery, into someone else’s hospital room, even if we can. That normative space disappears online, thus the mania for “trustless” technology and the renaming of interactions as “transactions” – in tandem, institutions are often attacked as being in the way and prime for disruptions by platforms, technologies, standards.
But man, trust isn’t standard, not most of the time. Trustless transactions will likely go the way of the semantic web – a key piece of very specific applications, but a long way from things that we see in daily practice as users.
On the other hand, trust in an institution is one of the strongest tools we have. It’s ancient tech, trusting an institution. But these days requires deciding that building institutions is a worthwhile activity. It requires accepting that in some cases, trust doesn’t scale, or standardize – and that the lack of scale is a feature, not a bug. It allows trust to be contextual to the institution asking for trust.
It requires trusting people at those institutions to do the right thing, and trusting the government to punish those who do the wrong thing. Trust requires an ecosystem of people and relationships, incentives and accountabilities. Which is pretty much the opposite of what we invest in.
My dearest heart’s desire for a world in which we trust more? An app that takes my previous five years of medical expenses and then helps me choose my plan during open enrollment next week, using pooled information about people like me. It’d be designed for trust – its core algorithms would live on my device – but it’d connect to the data of thousands like me to help me make an informed choice.
Instead I’ll puzzle my way through the documentation, check my patient portal for costs, and throw a damn dart, like I do every year.
Trust has to be earned. The example of Johnson & Johnson is a good one–they did what they had to do to earn trust back.
For me, the elephant in the room when we’re talking about trust in medicine in the United States is the misalignment of incentives in healthcare. For profit companies want to make profits. They are incentivized to keep things the way they are and keep disease going. Why try to solve it if we already have drugs A B and C for it? Maybe drug D will be better and more expensive!
This problem permeates research because researchers who are doing good work on logical and appealing low-revenue solutions like vitamin C for Covid, for example, have trouble finding peer-reviewed publications to publish their work. They also face an avalanche of bad press and sometimes multi-million dollar PR efforts.
Trust has to be earned, whether you are talking about Tylenol or prescription drugs or vaccines. The unequal power on the part of the pharmaceutical companies is obvious to consumers, and this sows the seeds of distrust. They are watered by a lack of transparency and rainshowers of PR and marketing campaigns.
I’m all for more trust. But we have a long way to go. Our government has been a lax regulator, and that has not helped. But the fundamental incentives in healthcare must be realigned in order to truly build a trustworthy system.
I’ve had this open in a tab in my browser for nine days now, cogitatin’.
First, Michael’s “can of butterflies” is genius, will go into rotation here.
Wilbanks’ dart throwing methodology is one I’m familiar with, regrettably. Funny, I don’t have to do that with financial institutions I do business with – another highly regulated industry. Why, healthcare, why?
IMO the trust issue is one that regulators – both at state and federal level – have little understanding of at citizen level, due to lingering patriarchal system-think within the walls of legislatures, and of health systems. Oh, and don’t forget the academic ivory towers that intersect with both.
My idea for fostering trust here would be to make community data trusts/commons-es both (a) understandable to average humans and (b) a norm in civic life. IOW, have citizens introduced to the concept of “their data” in common, and held in trust, at the community level.
Got your health data? Want to create a community data trust where you and your neighbors can track health data – from your wearables, your phone data, your healthcare providers – across the community to help early-warning emerging community health issues? You could also use that data as bait to get clinical research groups interested in working with your community on health issues: cancer clusters; behavioral health challenges; social determinants inequities.
Creating trust in the community would require regular “data open houses” (my term, if someone has a better one, sing out) – start with community centers, church groups, local interest/affinity groups. Talk about how individual data capture has primarily benefitted Big Guys (looking right at you, FAANG), but communities who gather together to build their own data trusts/banks/commons/pick-your-fave-word can start to leverage data power on their own behalf.
I mean, imagine plain ol’ folks standing together to build their own data (whatever), and saying “we’re open to FAIR and ETHICAL offers here,” and seeing what happens.
Hi Casey – love these thoughts. The only quibble I have is that ‘can of butterflies’ was Susannah’s, not mine. I agree, it’s genius, though 😉
OF COURSE it must have been Susannah – she’s the only person I know who could have come up with that =)
@Mighty Casey, love these ideas–individually empowering, community empowering. <3<3<3
Adding to our reading list on trust:
The Enduring Importance of Trust in the Leadership of Health Care Organizations, by Sachin H. Jain, MD, MBA; Catherine Lucey, MD; Francis J. Crosson, MD (JAMA. 2020;324(23):2363–2364. doi:10.1001/jama.2020.18555)
It’s highly readable, so please click through, but here’s the conclusion:
“Although the health care industry once enjoyed a high level of public trust, conflicting messages about the COVID-19 pandemic, ever-rising health care costs, news reports of greed, and other factors have conspired to erode that trust. At the same time, the organization of health care delivery and financing in the US is experiencing substantial change. Critically, the decline in trust has the potential to undermine the best aspects of this change and divert it in suboptimal ways. To ensure that the changes in health care are positive and well-intentioned and to build consensus around its necessity for the purpose of improving patient health outcomes, health care leaders must prioritize building and maintaining trust as an explicit organizational objective. If they fail to do so, they will likely be unable to enact reform or even navigate the channels of the status quo.”