Intended for healthcare professionals


Whose data are they anyway?

BMJ 1996; 312 doi: (Published 18 May 1996) Cite this as: BMJ 1996;312:1241
  1. Tony Delamothe
  1. Deputy editor, BMJ

    Raw data from research on patients should be available, anonymised, to whoever wants them

    “I like taking part in studies because it's for the greater good, like giving blood.”1

    As reports of medical research show, there are almost no limits to what patients will put up with if they believe that their actions may benefit others. Seemingly, no questionnaire is too probing, no programme of clinic visits and tests too gruelling, and no drug too vile to stop patients volunteering for research.

    Yet much of their goodwill is wasted. Many more research projects are begun than are completed, many more projects are completed than are written up, and many more papers are written up than are published. Of those that are published many are of poor quality,2 and few provide their raw data in a form that readers could use to check the authors' claims. Patients could justifiably argue that they are being sold short, given the inconvenience and risk that research often entails.

    Access to raw data, and their interpretation, lie at the heart of the latest skirmish in the salt wars, which dominate this week's BMJ. The president of the Salt Institute argues that “the entire Intersalt database… must be made available in its entirety to independent third parties for a thorough re-evaluation.”3 …

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