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# DataSharing saves lives . Inspiring to hear @ calif001 discuss his mother , a # myeloma survivor . # Fight4Hematology # PMWC17 # mmsm
Arjun Raj , PhD
@ arjunrajlab
Border agent : purpose abroad ? Me : scientific conference . BA : topic ? Me : single cell biology . BA : prokaryotic or eukaryotic ? # reallyhappened
Abraar Karan MD , MPH
@ AbraarKaran
How we talk / write about a patient is important whether or not they see / hear it ; it subconsciously will influence how we care about them too
The Cost of Not Taking Your Medicine
In The New York Times , physicians discuss the ramifications of medication nonadherence – a preventable epidemic that is estimated to cause 125,000 patient deaths and approximately 10 percent of hospitalizations annually in the United States .
“ When people don ’ t take the medications prescribed for them , emergency department visits and hospitalizations increase and more people die . Nonadherence is a huge problem , and there ’ s no one solution because there are many different reasons why it happens . … Although the consequences of ignoring medication may not show up right away , it can result in serious long-term harm .”
— Bruce Bender , MD , co-director of the Center for Health Promotion at National Jewish Health
“ There ’ s a societal push to do things naturally . The emphasis on diet and exercise convinces some people that they don ’ t have to take medications . … Medications remind people that they ’ re sick . Who wants to be sick ?”
— Lisa Rosenbaum , MD , instructor in medicine at Brigham and Women ’ s Hospital
“ There are so many reasons patients don ’ t adhere – the prescription may be too complicated , they get confused , they don ’ t have symptoms , they don ’ t like the side effects , they can ’ t pay for the drug , or they believe it ’ s a sign of weakness to need medication . That ’ s why it ’ s so hard to fix the problem – any measure we try only addresses one factor .”
— William Shrank , MD , chief medical officer at the University of Pittsburgh Health Plan
Should Clinical Trial Participants Have a Say in Drug Pricing ?
“ One group that has a large stake in the cost of drugs has been largely overlooked in this discussion : Those brave individuals who participate in drug trials . … I propose that every drug company should have to work with its clinical trial participants to set a price limit on the new medication , should it come to market , and to put this limit into a binding contract . Today , informed consent is presented as a ‘ take it or leave it ’ option . I propose that potential participants should be empowered to say , ‘ Yes , I will allow you , the sponsoring company , to experiment on my body only if you agree that you will not charge more than X dollars for this drug .’ … This would transform what has been a one-sided donation on the part of clinical trial participants into a two-way negotiation .”
— Spencer Phillips Hey , PhD , from the Center for Bioethics at Harvard Medical School , proposes a pricing contract between clinical trial participants and pharmaceutical companies in STAT
When Hype Leads to False Hope
Although there have been important advances in cancer care in recent years , most patients with advanced cancers eventually die of their disease – despite the messages conveyed in pharmaceutical advertising . In Kaiser Health News , clinicians and patient advocates weigh in on the overly optimistic tone that news media , pharmaceutical manufacturers , and even cancer centers take when discussing marginal advances in outcomes .
Why People Openly Share Genomic Data
“ The nature of today ’ s health data is evolving . Along the way , we are learning how to extract new forms of value from those data . And whereas vast repositories of genomic data might give companies unprecedented power , new technologies have also ushered in an era of new possibilities for citizen science . ... Volunteers [ share ] their genomic , health , and trait data publicly and encourage individuals to allow for their genetic data to be used in research projects . … It is crucial to consider benefits , risks , and developments that stretch beyond the health spectrum . We ought to pay attention to the value users attach to being tested and to sharing data also in terms of contributing to the common good of research or seeking connection to other people and places .”
— Tobias Haeusermann , PhD , a researcher in the Health Ethics and Policy Lab at the University of Zurich and in the Department of Sociology at the
University of Cambridge , on the advantages of sharing genomic data in The Scientist
“ There is a disconnect between what researchers think is statistically significant and what is really significant for patients . Patients hear ‘ progress ,’ and they think that means they ’ re going to be cured .”
— Timothy Turnham , former executive director of the Melanoma Research Foundation
“[ As commissioner ] I announced a goal of eliminating suffering and death due to cancer by 2015 by better understanding tumor genetics . … We all fall into that trap . We ’ re offering what we have , but making it appear that it ’ s more than what it is .”
— Andrew von Eschenbach , MD , senior fellow at the Milken Institute and former commissioner of the U . S . Food and Drug Administration
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44 ASH Clinical News July 2017