I wrote briefly about the Open Science Champions of Change event last week, but almost a week later the impassioned message that Kathy Giusti delivered is still with me. Giusti is the Founder and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF), and is herself battling the fatal disease. In her introduction, and later during the panel discussion, she made a strong case for patients to be able to opt-in to open access data sharing. I thought I’d point to these two moments in the 2 hour video stream, and transcribe what she said:
Patients don’t know that data is not shared. They don’t know … If patients knew how long it took to publish, if they knew, it’s your tissue, it’s your data, it’s your life. Believe me, patients would be the first force to start really changing the culture and backing everybody around open access.
Q: A lot of people when they hear about the sharing of clinical data talk about concerns of privacy. How do we start to handle those concerns, and how do we actually encourage patients to contribute their data in meaningful ways to research, so that we can actually continue to drive the successes that we are seeing here?
Giusti: When you’re a patient, and you’re living with a fatal disease, you don’t lie awake and wonder what happens with my data. If patients understand the role they can play in personalizing their own risk taking abilities … We all do this when we work with our banks. There’s certain information that we’re always giving out when we go online, and there’s certain information that we always keep private. And in a future world that’s what patients are going to do. So when you start talking with the patients, and you ask them: “Would you be willing to share your information?” It just depends on the patient, and it depends on how much they would be willing to give. For someone like me, I’m an identical twin, the disease of Myeloma skews in my family, my grandfather had it, my identical twin does not, I would be crazy not to be published … and I’ve done it, and so has my twin … biopsies, whatever we need. Put it in the public domain. I know everybody isn’t going to be like me, but even if you get us half your information we’re making progress, and we can start to match you with the right types of researchers and clinicians that care.