BACK of the BOOK
Heard in the Blogosphere
Pricing Cures Out of Reach
“As an oncologist, I am thrilled that we are reaching the point where
patients once deemed hopelessly incurable can be cured. But as a
citizen, I am worried that high drug prices, and high health care costs
generally, will overwhelm the economy and the federal budget. Unless
something changes, the new immunotherapies for treating cancer will
present us with a terrible choice between saving lives and seeing the
country go broke.”
—Ezekiel Emanuel, MD, PhD, on the dilemma of life-saving but high-priced potential cancer cures,
in The Wall Street Journal
Preauthorization Particulars
“For the latest example of unintended consequences in the U.S.
health-care system, consider preauthorization. Before paying to
cover a treatment, insurers increasingly require doctors to seek
their approval. That’s meant to cut waste and ensure quality.
Instead, it causes delays and deprives patients of care they need. …
[Preauthorization] delays care, compounds the administrative burden
on providers, and often imposes restrictions that aren’t evidence-
based. … Patients and physicians are the best judges of their clinical
and financial options. Rolling back preauthorization would empower
them significantly. … Americans could become better stewards of their
very own care.”
—Richard Menger, MD, on the hassles of preauthorization, in The Wall Street Journal
The Writing on the Paywall
“To manage submissions, peer review, editing, and publication,
quality scientific publishing requires infrastructure that costs money.
… [Open-access publishing] combines the benefit of professional
publishing and peer review with increased access to scientific research.
… How will the scientific community and the country as a whole pay
for and support an infrastructure that ensures scientific rigor and
accuracy while preserving accessibility? Even without a profit margin
or print-based journals, the fact remains that it costs money to publish
scientific research.”
—Martin Zand, MD, PhD, on the unanswered questions about open-access publishing, in STAT News
Big Data = Big Paperwork Problems
In the era of precision medicine, researchers are dreaming of a
database that could link a patient’s medical records, treatment, and
outcomes with their genetic data to help inform treatment decisions.
But, they’re running into a huge roadblock: gathering information from
medical records. In The New York Times, researchers and providers
spoke about the difficulties of extracting information from the U.S.’s
nonstandardized records system.
“About 50 percent, if not more,
of the critical details we need
for research are trapped in
unstructured documents. They
are in PDFs. Maybe a doctor
put in a note by hand, maybe
a doctor typed it. That note
became a narrative. It is not
something that can easily be put
into a spreadsheet.”
—Amy Abernethy, MD, chief medical officer
of Flatiron Health
The Battle Over Military Metaphors
“Bellicose rhetoric [about cancer], which was intended to galvanize the
public and swell the coffers of cancer research, is at best misguided
and at worse counterproductive. It forces a patient’s cancer outcome to
be viewed solely in terms of victory or defeat, and, most distressingly,
dictates the vocabulary that individuals themselves use to understand
and speak of their disease. … [Military metaphors] propagate the
dangerous myth that cancer capitulates to patients who possess a
dogged resolve and that death is the result of a personal failure to
fight hard enough. … Language has consequences in so many aspects
of our lives, so it makes sense that the language we use to talk about
illness would also matter.”
“At this point, [medical records]
are not to a level that helps with
the detailed clinical data that we
need for the scientific questions
we want to ask. Even though
the patients are saying, ‘I have
consented for you to obtain my
medical records,’ there is no good
way to get them. … Patients are
incredibly engaged and excited,
[but] right now there isn’t a good
solution.”
—Nikhil Wagle, MD, cancer genomics researcher
at Dana-Farber Cancer Institute
“What drug did [patients] get?
Did they respond? Did they
survive? Were they cured? Data
are trapped. This is a huge
problem. It is phenomenally
important.”
—Ned Sharpless, MD, director of the
National Cancer Institute
Continued on page 164
—Jalal Baig, MD, on the damages of using martial language to describe a cancer diagnosis,
in an editorial for NBC News
162
ASH Clinical News
December 2018