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Center for Global Research Data

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August 16, 2019 | Patients Don’t Have the Luxury of Patience

Long-term cancer survivor and patient advocate Jane Perlmutter tells us why data sharing is so important for people with rare diseases.

Q: Why should we share data from clinical trials? 

Jane Perlmutter: I spent half my life as a cancer survivor. At first, I thought I wouldn’t survive it–and I’ve had three more cancer diagnoses since. I’m still here. And I’m here because people have contributed their own experience by being in clinical trials.But we need to learn faster. I like to say patients don’t have the luxury of patience. By allowing researchers to get access to data from multiple clinical trials, we can get to better solutions more rapidly and help more patients.

Q: What does data sharing mean for people with rare disease?

JP: When patients are diagnosed with a disease, especially a rare disease, it’s often very traumatic, and they want to find some way to get meaning out of that traumatic experience. One way is to participate in a clinical trial. They hope that their experience helps answer some questions and lead to some solutions so that their children or future generations won’t have to suffer the same things as they did. Sharing data from these trials increases the chances that their experience will be meaningful. There are fewer trials for very rare diseases, and that’s one reason why it’s even more important that we share those data and make the most of them.

Q: Aren’t you concerned about privacy with data sharing? 

JP: To make people feel secure in sharing their data, we need to ensure there is some privacy so that their personal information doesn’t get out. When it comes to rare diseases, there are fewer of those patients, so protecting their data becomes even more of a challenge. The good news is, there are many ways to protect patients’ identities. And, while privacy is important, what’s most important for the patients–and they will tell you this–is that many researchers can use the data. A recent study showed that 93% of patients who are in clinical trials are happy to have their data shared with more and more researchers.

Q: How can platforms like Vivli help?

P: It can be difficult for a researcher that runs a clinical trial to figure out how to share data, but Vivli makes it easy. To learn as rapidly as possible, and get to better treatments and cures faster, researchers need as much data as they can get their hands on. That’s what Vivli is all about.