Re: Freedom of information: can researchers still promise control of participants’ data?
Patient confidentiality and protection of patient data should be (and is) a primary concern for clinical trials. But so too should be the principles of high quality, reproducible science that is open to re-analysis and discussion. In fact, as this landmark case shows, it is not impossible to have both.
The data is now publicly available (1) and it is clear that identification of any individual who took part in the trial would not be possible from this data set. A preliminary analysis (2), backed by statisticians is now available online and no doubt peer-reviewed publications will follow. This is how good science happens, and all credit to the patients for pursuing this goal.
The greatest danger here lies not in the vanishingly small chance of patient identification that comes from releasing anonymised data, but rather in choosing to keep clinical data closed, thus quashing scientific progress through the normal processes of discourse and debate. And if that happens, the biggest losers of all are of course, the patients themselves.
Rapid Response:
Re: Freedom of information: can researchers still promise control of participants’ data?
Patient confidentiality and protection of patient data should be (and is) a primary concern for clinical trials. But so too should be the principles of high quality, reproducible science that is open to re-analysis and discussion. In fact, as this landmark case shows, it is not impossible to have both.
The data is now publicly available (1) and it is clear that identification of any individual who took part in the trial would not be possible from this data set. A preliminary analysis (2), backed by statisticians is now available online and no doubt peer-reviewed publications will follow. This is how good science happens, and all credit to the patients for pursuing this goal.
The greatest danger here lies not in the vanishingly small chance of patient identification that comes from releasing anonymised data, but rather in choosing to keep clinical data closed, thus quashing scientific progress through the normal processes of discourse and debate. And if that happens, the biggest losers of all are of course, the patients themselves.
References:
1) Reference 10 in : Virology Blog http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis...
2) Virology Blog http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis...
Competing interests: No competing interests