Who Are the Real Data Parasites?

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  • 01/25/2016
In his Forbes.com blog David Shaywitz comments on an editorial in the New England Journal of Medicine (NEJM), written by editor-in-chief Jeff Drazen, along with Dan Longo. "that a new class of research person will emerge—people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.”

Shaywitz writes he was delighted to see the editorial:

"Not because I agreed with it–my heart is truly with the data scientists–but because I was grateful that someone had the courage to articulate a perspective I’ve come to believe is shared by the vast majority of academic researchers, but publicly voiced by no one–until now.
The result: a classic case of stated preference vs. revealed preference, where every academic researcher dutifully claims to be interested in sharing their data widely and freely, but somehow, tend not to actually do this."

David is right.  But there is even more reason to ‘cheer’ the NEJM article.  It reveals that scientist think it is “their” data when in fact it is the patient’s data.  The researcher is entrusted with that data by us to use it to advance science and promote cures. 

And the self-interested way such data is used – or shared – often abrogates the social contract in many ways.

Let me focus on one in particular, from the research article in the NEJM -- CDX2 as a Prognostic Biomarker in Stage II and Stage III Colon Cancer -- that was the subject of the editorial.  The researchers used data collected from cancer patients by the National Cancer Institute.  Drazen and Longo call this “symbiotic collaboration.”   I would call it another permutation of an approach that betrays patients. 

The article notes: “Given the exploratory and retrospective design of our study, these results will need to be further validated. We advocate for these findings to be confirmed within the framework of randomized, clinical trials, in conjunction with genomic DNA sequencing studies.”

In other words, the symbiotic collaboration first and foremost will be used to fund randomized trials and sequencing studies support by the same programs that were paid to put together the tissue bank.  As Stuart Kauffman, Colin Hill, Sui Huang and Lee Hood have noted: the methods used to generate so-called evidence-based medicine -- the basis for medical practice and reimbursement—randomized clinical trials (RCT) and comparative effectiveness research—are dangerously broken.

Data-sharing that respects the needs and hopes of patients is defined by how broadly data is shared and the degree to which researchers use data to tailor cancer treatment combinations to achieve the best outcomes possible.

So by definition, companies that use data from a variety of sources to establish biomarkers independent of the researcher who extracted tissue from patients in single person trials and based on powerful machine learning derived algorithms are supporting mutualistic relationships. 

Researchers that boldly push for the Drazen model are, in my opinion, the true data parasites.

I think lots of researchers become researchers because they want to change the world for the better.  You can check out the LabTV YouTube channel and see short videos of hundreds of researchers with such an ethos.   The Drazen model merely reinforces the control of a small elite that are both disdainful of people like Eric Topol who is paving the way for a consumer led data revolution and fearful that the transformation means they will be out of jobs.  Lee Hood’s P4 medicine vision is based on collecting and sharing data generated by patient activated social networks.  Would Drazen call Dr. Hood a parasite??

To those who say that sharing will reduce incentives for innovation, just the opposite is true.  Establishing the relationship between molecular insights and meaningful changes in disease progression depend heavily on collaborations that leverage the digitization of biology to its fullest. 

As Shaywitz points out, now that we know the true motives of researchers, we can define the parasite problem and tackle it head on.

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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