CardioExchange Archive

CardioExchange, an NEJM practice community for medical professionals dedicated to improving cardiac patient care, was active from 2009 to 2015. CardioExchange fostered discussion between clinicians from across the globe.

October 5th, 2012

A Plea For Open Science And Data Sharing

I am still out pushing the cause of open science and data sharing. Something we can do better through the scientific community. It starts with the will – and a focus on societal good. The ‘how’ is challenging – but the problems can be solved.

Earlier this week I gave a talk at an Institute of Medicine workshop on this topic. I told the group:

Let’s be clear about what is needed. We need to have studies published and summary results reported on clinicaltrials.gov – but that is not enough. We need to have individual patient-level data broadly available for investigators – not parsed out to selected individuals – but available broadly and freely.

I invite CardioExchange members to read the whole talk— don’t worry, it’s brief– and start a discussion here about this important subject.

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3 Responses to “A Plea For Open Science And Data Sharing”

  1. Mark Dayer, MD PhD FRCP says:
    October 9, 2012 at 3:59 pm

    I’d second that. Good talk.

    I agree that credit should come from the papers generated from the data. I suspect the “how” part is more difficult – not because of technology or inventiveness but because of mindsets.

    Open access is one of the most important issues in the scientific community. This follows well from and builds on Tim Gower’s blog at the start of this year (http://gowers.wordpress.com/2012/01/21/elsevier-my-part-in-its-downfall/).

  2. Kingston Okrah, MD, MS says:
    October 12, 2012 at 10:51 am

    Great talk, Harlan.
    I am very early in my career but so far the impression I have been given is that investigators make their career out of these data. “Hold on to everything and milk as many publications out of it as possible” so that one can rise up the tenure ladder. I hope my more experienced colleagues will consider this in the discussion yet to start.

  3. John Ryan, MD says:
    October 12, 2012 at 2:18 pm

    Good point Kingston. As Harlan highlights, part of the question is “who owns the data”? If it is patient data, does the patient own it or does the investigator own it? And if it is the investigator, then what does the young investigator like you and me have to do to “earn” it? In essence, would it perhaps be more appropriate to “own” the intellectual component of the data, namely the area that you are studying and the question you are asking, rather than the data itself?