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Potential dark side of sharing data

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.D.  and E. Magnus Ohman, M.D., discuss in this Medscape video the potential dark side of medical-data sharing.

Among their dialogues:

Dr. Ohman: “{H}aving people who are not familiar with the database, looking at data when they had not been involved in the trial or they don’t know the definitions or how the whole thing was set together, can actually be harmful. The reason I say that is because if a person does a few trials, his experience and knowledge is very different from those of us who have done hundreds of trials. When you look at the dataset, it is very different from the person who never spent much time in trials. It is like selecting the uneducated to run the education, and that, to me, is completely wrong. We need to have some way of sharing the data. I don’t know what the best strategy is, but I’m worried about this strategy. I’m holding back on it.

Dr. Harrington: “Let me push a little bit. I like the idea of getting more people involved, even people who come with a different perspective and maybe a very different set of experiences. They might approach the data in a very different way. I’m excited by that, but I also want to hold back a little bit to figure out things like how we can give people access to the data in a way that respects the rights of the patients who are in the study. Did they agree to share their data with the world or only with a certain group? We’ve got to talk about that. I’m also concerned about the rights of the investigators who devoted years of their lives to do something and might have a series of questions that they have lined up to answer. As you know, this can play out over a year or two. Somehow, we’ve got to bring all of this together—the rights of the patients, the hard work of the investigators, and trying to get that outside perspective.”

To watch the video, please hit this link.

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