ASH Clinical News January 2017 | Page 35

Heard in the Blogosphere

BACK of the BOOK
Hype Versus Hope in Medical Research
“ Science consistently pays enormous returns on society ’ s investment , transforming the way we live and work . It ’ s only natural that expectations run high . That said , the scientific path from biological insights to medical impact is often long and winding . … Yet , if the public overestimates the impact of science and technology in the short run , it underestimates the transformative power over the long run . ( This insight is sometimes called Amara ’ s Law , after a 20th-century scientist and futurist .) We need to convey the long-term horizon for transformative impact , while celebrating and sharing advances in research and treatment along the way . We must set ambitious goals that rally scientific energy and action , but not overpromise . We all need to get better at making the case for realistic optimism .”
−Eric S . Lander , PhD , founding director of the Broad Institute of Massachusetts Institute of Technology and Harvard University , discussing the difficult balance between hype and hope in medicine in The Boston Globe
Data Sharing Done Right
ASH
@ ASH _ hematology
Get a sneak peek behind the scenes at # ASH16
Benjamin Mazer , MD
@ BenMazer
The proliferation of fraudulent scientific journals is not the problem , it ’ s the reaction to the problem of using papers as currency .
“ With the growth of data analytics as a science , clinical trial data are more than just simple resources . ... What we have seen , and what researchers we ’ ve spoken to have said , is that understanding clinical trial data sets is not easy . No matter how carefully data are curated , there are always questions . If someone wants to use a data set , they need to understand it and use it wisely and responsibly . … From our perspectives as trialists and data analysts , we support clinical trial data sharing . We also have heard , and published in the pages of the New England Journal of Medicine , that not all members of the scientific community agree on how to share clinical trial data . We know that reusing data will not be easy , but it has the potential to teach us things we did not know . … We will not reach the desired endpoint unless all constituencies in this discussion – trialists , data analysts , and patients − come together to develop a framework for data sharing .”
– Isaac S . Kohane , MD , chair of Harvard Medical School ’ s Department of Biomedical Informatics , and the New England Journal of Medicine Editor-in-Chief Jeffrey M . Drazen , MD , ( who authored the controversial “ data parasites ” editorial ) on creating a framework for data-sharing initiatives , in STAT News
Atul Gawande , MD , MPH
@ Atul _ Gawande
My fave quote of # WHFrontiers : “ We have Star Wars medicine in a Flintstone system ” -Freda C . Lewis-Hall
A New Type of Patient-Directed Research
In NPR ’ s Morning Edition , patient advocates discussed the growing role of the patient advocate in medical research – from outsider to participant – and the benefits and downsides of that transition .
Maggie Hardy , MSc , PhD
@ DrMaggieHardy
For scientists new to Twitter , I explain the medium as like peer-review , but Reviewer # 3 is everywhere and it ’ s all public .
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@ ASH _ Hematology
“ The bad news about what ’ s happening is that so much of patient input is involving patients who are working with or who are recruited by drug companies . The patient voices are sometimes inadvertently channeling commercial interests . Clearly patients should have a voice in how big a risk they are willing to take , but within limits . I think it ’ s safe to say we need a sweet spot , and it hasn ’ t been found . And the [ U . S . Food and Drug Administration ] has not done a good job of finding that sweet spot .”
– Diana Zuckerman , director of consumer group the National Center for Health Research
“ I think the fact that [ the FDA is ] holding meetings inviting patients to talk about what matters to them – they are well-organized and well-planned – indicates that [ the organization is ] taking it very seriously . Companies seem to develop drugs without regard to what patients actually value most , and I think patients have very little influence with drug companies .”
– Kevin Longino , CEO of the National Kidney Foundation
“ I think advocacy still has a place , but I ’ m starting to be concerned myself − and , again , I run one of these groups – about how much that we ’ re becoming ‘ the man .’ We really need to break down our silos . We start to be insular ; we start to be competitive . And that ’ s not going to serve the people who suffer .”
– Sharon Terry , CEO of the patient advocacy group , the Genetic Alliance
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