“Too much ownership of data and secrecy involved”

From the 21 March 2012 article by Gary Schwitzer at HealthNewsReviews.org

That’s what one author writes in a series of papers published in Circulation: Cardiovascular Quality and Outcomes this month addressing issues involving the integrity of research data.

Yale’s Harlan Krumholz writes: “Patients facing a decision deserve information that is based on all of the evidence.”  Further excerpt:

Every day, patients and their caregivers are faced with difficult decisions about treatment. They turn to physicians and other healthcare professionals to interpret the medical evidence and assist them in making individualized decisions.

Unfortunately, we are learning that what is published in the medical literature represents only a portion of the evidence that is relevant to the risks and benefits of available treatments. In a profession that seeks to rely on evidence, it is ironic that we tolerate a system that enables evidence to be outside of public view. Those who own data, usually scientists or industry, have the choice of what, where, and when to publish. As a result, our medical literature portrays only a partial picture of the evidence about clinical strategies, including drugs and devices. Experts have recently drawn attention to this issue, including contributions in this issue of our journal, but there is resistance to change….

The article goes on outline how sharing of clinical trial and research data could be shared for the common good.

Read the entire article here

Related articles

• Bias and error are rampant in medical literature (kevinmd.com)
• Data sharing as a moral imperative (Marilyn Mann’s blog)
• Open Science and Data Sharing in Clinical Research
  Basing Informed Decisions on the Totality of the Evidence (Circulation)
• Strengthening and Opening Up Health Research by Sharing Our Raw Data (Circulation)
• The Importance of Clinical Trial Data Sharing (Circulation)
• Scientific evidence (sixpointnineme.wordpress.com)
• Many NIH-funded clinical trials go unpublished over 2 years after completion (eurekalert.org)