the former Google chief health strategist is trying to facilitate through Smart Patients, an online community for patients and caregivers affected by complex illness.
Zeiger believes patients need to be involved more closely and earlier in the clinical trial development process, applying the software industry’s mantra of “user-centered design” to healthcare.
“Can you imagine if the first time an end user provided feedback about the iPhone was when the iPhone was put on the shelves of the Apple store?” Zeiger says. “We can do a better job if we collaborate with patients when we’re making strategic decisions about what a new drug might be designed to do, about what our research priorities are, and about how to design the trial—not just asking patients to be involved when all the decisions have been made and it’s time to try to get the first patient into the trial. It’s too late.”
Zeiger thinks the crowdsourcing campaign could attract valuable ideas, but he cautions that “a thoughtful, but modest, effort like this” is unlikely to “solve a massive problem” by itself.
“I think this is an important step in understanding the kinds of ideas people may bring to the table, some of which will be excellent, and maybe even useful,” he says. “I’m confident that they will at least trigger others to generate additional ideas and start a series of conversations that will lead us to more collaboratively solve the many challenging problems that we face in doing better science.”
Thompson, the Milwaukee doctor who was not involved in planning the crowdsourcing campaign, thinks the project is an interesting idea. The keys, he says, will be whether contributors offer ideas that go beyond rehashing what the industry already knows about the issue—and whether the effect of the ideas that get put into practice can be objectively measured. But at the very least, “it’ll probably get people unaware about the barriers [to clinical trial participation] talking about the barriers,” he says.
