Patient collaboration barriers and the 'willingness to iterate forever'

By Melissa Fassbender contact

- Last updated on GMT

(Image: iStock/olgachov)
(Image: iStock/olgachov)

Related tags: Clinical trial

Patients must be more involved in trials according to ex Google Chief Health Strategist, who told sponsors and CROS that increasing engagement is key to moving forward.

Roni Zeiger is the former Chief Health Strategist at Google where he developed digital medical services like online medical records, Google Flu Trends, and Symptom Search. Currently, he is the CEO and co-founder of Smart Patients, which leverages expertise and networks developed by patients.

Earlier this month, Zeiger addressed industry professionals at the Avoca Quality Consortium in Princeton, New Jersey. His keynote focused on patients as collaborators and how companies can better communicate them.

According to Zeiger, it is no longer a question of if, nor when, but how patients will become collaborators.

If we start taking a look at not just around us … we’ll see that if we don’t hurry up and learn how to do this - and it doesn’t have to be hard - we’re in big trouble​,” he said, adding that it’s not a question of whether to innovate with patients, but whether to innovate at all.

Roni Zeigler at the Avoca Quality Consortium Summit

But how are patients engaged?

Zeiger explained that the industry faces a cultural challenge on how to collaborate in a way that “protects us, but also invites a spirit of collaboration​.” He gave the example of hospital discharge instructions with the caution: “sexual activity as tolerated.​”

I thought, tolerated by whom​?” he quipped, but pointing to a larger issue of the inherent communication barriers that are put in place by the industry.

This phrase is only used in discharge instructions​,” he explained, “and is a beautiful example of the way we have conversations in this intimate context that puts implicit barriers in place​.”

According to Zeiger, another barrier in the industry is clinical trial professionals thinking of their work as experiments. “Most patients think of clinical trials as treatment options​,” he said, “not treatment options that they want, but the best option that they have​.”

Designing trials with patients in mind

If a clinical trial is a product it is designed, built, packaged and delivered “to shelves all over the world before a patient sees it​,” explained Ziegler.

On the contrary, consumer products go through several rounds of user testing during the design process. According to Ziegler, if we think of clinical trials as products, then the users should be involved in its design such as they are when a consumer product is developed.

Ziegler then posed the question, “what have you learned from patients today​?” adding that “if you have trouble answering that question we’re probably doing something wrong​.”

I’m really worried about this industry​,” he said, pointing to the amount energy and the excitement in the industry.

I think your colleagues and your employees need this or were going to be se even more brain-drain and excitement-drain from pharma​,” Zeiger said to the Summit audience. “This is neither hard nor expensive​ … It just takes a willingness to begin, and a willingness to iterate forever​.”

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