“Any day now” is today: Pfizer pioneers individual data sharing for US clinical trial participants

At DPHARM 2023 in Boston, Pfizer announced that it has taken the first steps towards sharing clinical trial participants’ own data with them – something participants have sought for years.

In healthcare, there are a few problems that everyone from – hospitals to insurers to pharma – can relate to, and one of those problems is data silos. There’s a huge amount of data on patients locked away in the vaults of each of those stakeholders, and for reasons that range from business competition to patient protection, it’s often not possible to share that data, even when doing so might help patients.

And, ironically, the people with the least access to data are often the patients themselves. After long campaigns, patients are starting to have the right to access clinical notes about them and to download their EHR data, but there’s still a lot of data out there that defies the cry of the patient advocate, “Nothing about me without me!”

This lack of access to one’s own data is especially egregious for patients who choose to give their time and energy to participate in a clinical trial, yet might never know something as basic as whether they were in the placebo group, much less have access to the data collected at study visits, which could be useful to their primary and specialty care providers.

“Our clinical trial participants have been demanding it of us, and they have been doing it for years,” Pfizer’s enterprise clinical trial data sharing lead, David Leventhal, said recently at DPHARM 2023 in Boston. “And it’s been a story of ‘any day now’.”

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