“Patients, industry and all different stakeholder groups are showing real interest in getting data-sharing operationalized across the sector as part of routine clinical research,” said Jennifer Miller, founder of the nonprofit Bioethics International, which compiles the ranking, and an assistant professor at Yale University School of Medicine.
Pharma companies are interested not only for the value of the information itself, but also as a social responsibility tool to “prove” their patient centricity.
“91% of Americans think pharma companies put profits before people. That’s the exact opposite of patient centricity, that’s profit centricity, right?” she said. “So what is their evidence in patient centricity? They have to define that and be able to prove that they’re operationalizing it. The Good Pharma Scorecard is one way of auditing their performance on social responsibility patient centricity.”
Of course, the goal of the scorecard isn’t only to measure data-sharing policies and practices, but also to improve those practices. That was borne out this year when Bioethics gave companies a 30-day window to increase their score. Half of the pharmas in the lower ranks jumped at the chance to improve their scores, showing ranking tools can be useful as a reform strategy, she said.
“They were willing to do it, and I think people might be surprised by that. When I usually give this talk, critics will say, ‘No large multinational company can change policies and practices in 30 days,’ sort of saying, 'This is hopeless, why even try?' But that’s not true at all. At least some of them are willing to change practices to make sure they’re operationalizing and evidencing patient centricity,” Miller said.
There is still room for improvement, of course, as only four out of the 12 pharma companies got perfect data-sharing scores. Another area that could be improved upon is setting and meeting reporting deadlines. While many agree to release research data, they don’t always give a specific date or deadline to file, Miller said.