We’ve been talking about this for a long time. Gordon Guyatt, another of our conference keynote speakers, along with Andy Oxman and others, wrote 20 years ago
Fast forward to today and the internet and social media present new challenges. This David Henry piece in PLoS One looked at news stories driving people to the web – perhaps for more harm. This Health Communication piece looked at confusing news coverage driving people to the web – again with the potential for Good or Harm.
16 years ago this Roper survey
Ask for show of hands
We have an increasing number of media organizations actually partnering with screening advocates for non-evidence-based promotions. State Fairs big in MN where Victor and I come from…Not sure if this last photo depicts anything about the screening process itself
Sometimes if the “Just Say NO” story is going to be told, you have to tell it yourself, as nurse practitioner Veneta Masson did in several media formats
The NYT and USNWR were two of the only news orgs to tell this story
Like robotic surgery….or
Schwitzer keynote to ISDM 2013 Lima, Peru
What Consumer-Centered Journalism Could
Do to Promote Patient-Centered Care
Index of Scientific Quality for Health Reports in the Lay Press
- Andy Oxman, Gordon Guyatt et al, J Clin Epidemiol, 1993
“Medical news reports may increase or diminish
the willingness of individuals to present
themselves for care or for clinical trials, may
raise expectations (sometimes falsely), may dash
hopes or may provoke alarm (sometimes
A Prompt to the Web: The Media & Health Information
- PLoS One 2012
“longstanding concerns about quality of info in traditional media and
growing concern about quality of info available on internet and newer
Behavioral Consequences of Conflict-Oriented Health News
Coverage: 2009 Mammography Guideline Controversy & Online
- Health Comm 2011
“compelling evidence that news coverage can impact people’s health
information-seeking behavior, which may be the first step toward actual
We review stories
that include claims
• Medical treatments
Our criteria: Does the story
• What’s the total cost?
• How often do benefits occur?
• How often do harms occur?
• How strong is the evidence?
• Are there alternative choices?
• Is the condition exaggerated?
• Is this really a new approach?
• Is it available?
• Who’s promoting this?
• Do they have a financial conflict of interest?
story reviews –
News stories often paint a
of U.S. health care
Without a price tag
“75% of Americans pay at least a moderate amount of
attention to medical/health news, but only half say they
get the right amount to keep them well informed.”
• 15% say they get so much such news that they have trouble
sorting through all of it.
• 58% say they have changed their behavior or taken some action
as a result of health care news stories
• 76% of them say they “took the advice offered in the news
Americans Talk About Science and Medical News: The National Health Council Report
Roper Starch survey of 2,256 adults – December 1997
“More than half of the public says that
national, local, or cable news is their most
important source of health information.”
- Kaiser Family Foundation
Harvard School of Public Health, 2001
Agenda Building, Source Selection &
Health News at Local Television Stations
- Science Communication 2004
• > half the local TV health reporters surveyed said they receive most of
their ideas from a PR person or press release.
• > half said their health reports were sponsored
• 13% said the sponsor affected their decision to cover a story but
qualitative research suggests some feel obligated to ue the story ideas
pitched by their sponsor or use sources only from the sponsor.
If significant % of consumers believe everything they
hear in the news, what impact may that have on SDM?
• Use of statins for primary prevention in low-risk people?
• Choice of robotic surgery for you-name-it?
• Screening tests for you-name-it?
• Use of coronary calcium scans?
• Faith in vaccines?
• Attitudes about imaging for low back pain?
• Advance directives, end-of-life issues?
• “Cures..breakthroughs…dramatic…promising” interventions
How many of you have had patients
come in asking about such things
they heard in the news?
Common flaws: too much stenography – not
independent vetting of studies in journals
Not ready for prime time – journals meant for
conversation among scientists
Never intended to be sources of daily news. So if
journalists are going to use them that way, they
must be aware of the landscape:
• retractions, research
fraud, fabrication, falsification of data
• unpublished data, ghostwriting
Learn from John Ioannidis about
pitfalls of steady diet of journal stories
PLoS Med 2005; 2(8): e124
Journals complicit in miscommunication
• Editors of the HEART Group journals stated that
“inappropriate word choice to describe results can
lead to scientific inaccuracy.”
– J AM COLL CARDIOL, Vol. 60, No. 23, 2012
• “Are we making a mountain out of a mole hill? A
call to appropriate interpretation of clinical trials
and population-based studies”
– Am J Obstet Gynecol, published online 11/29/12
• “Spin and Boasting in Research Articles.”
- Commentary in Arch Pediatr Adolesc Med:
[published online October 2012]
Reporting on papers presented at scientific meetings
- Even more problematic than reporting on journals
Idolatry of the surrogate – Not understanding or
simply not reporting that surrogate outcomes (like
tumor shrinkage) may not translate into clinically
meaningful outcomes (longer life).
Tyranny of the anecdote – telling success stories but
rarely profiling dropouts, dissatisfied, those who
choose conservative route or lifestyle change instead
What is the quality of
the shared decision-
are promoted with
wine, cheese, fondue,
icures, paraffin hand
consultations, etc. ?
Sharon Begley reported for Newsweek
“Dr. Rita Redberg, professor of medicine at
the University of California, San
Francisco, and editor of the prestigious
Archives of Internal Medicine, has no
intention of having a screening
mammogram even though her 50th
birthday has come and gone. That’s the
age at which women are advised to get
one. But, says Redberg, they detect too
many false positives (suspicious spots that
turn out, upon biopsy, to be nothing) and
tumors that might regress on their
own, and there is little if any evidence that
they save lives.”
• Reported on woman with DCIS – ductal carcinoma in situ
• Reported on her choice to pursue active surveillance rather
than immediate aggressive intervention such as bilateral
• Reported on the shared decision-making program at UCSF that
helped her understand the tradeoffs.
THAT IS GOOD JOURNALISM
Men who didn’t have
SDM prostate screening
Tim Glynn, lawyer, age 47
when his doctor “decided I’d
have a PSA test without
consulting me…..Men should be
aware of the truly terrible
consequences. As a screening
tool, you could do as well by
throwing dice on a table.”
in New York Times
“Can Cancer Ever
Sharon Begley in Newsweek:
“Dr. Stephen Smith, Professor emeritus of
family medicine at Brown University
School of Medicine, tells his physician not
to order a PSA blood test for prostate
cancer or an annual electrocardiogram to
screen for heart irregularities, since
neither test has been shown to save
lives. Rather, both tests frequently find
innocuous quirks that can lead to a
dangerous odyssey of tests and
The marketing of screening
In 2010 after the National Lung Screening Trial
results were released, the American Cancer
"It's only been a few days since researchers
released preliminary results… our greatest fear
was that forces with an economic interest in the
test would sidestep the scientific process and use
the release of the data to start promoting CT
scans. Frankly, even we are surprised how
quickly that has happened."
Interviewed Otis Brawley:
“We really need to weigh the harms associated with
screening. The scientific community still needs to digest
this…A lot of people run out when there is a new
announcement and get the new test. We’re very
frightened some people are going to be harmed
because of this.”
• Began with virtual colonoscopy – after routine physical.
• But scan also showed something on kidney, liver, and lungs.
• Kidney and liver issues benign after liver biopsy, PET scan and more CT scans. But lung
questions led to major lung surgery
“I awoke in the recovery room after 5 hours, with a chest tube, a Foley catheter, a
subclavian central venous catheter, a nasal oxygen catheter, an epidural catheter, an
arterial catheter, subcutaneously administered heparin, a constant infusion of
prophylactic antibiotics, and patient-controlled analgesia with intravenously
administered narcotics…..Excruciating pain.”
• No malignant disease – all “incidentalomas”
• Total cost > $50,000
• All precipitated by a screening test
If we don’t improve discussion on screening, we may
never improve public dialogue on expensive new
technologies – “Gizmo Idolatry”
JOSH BILLINGS (PEN NAME OF HUMORIST
HENRY WHEELER SHAW, 1818 – 1885)
Because there are harms in making people more
hopeful or more frightened than evidence and
rational thinking would warrant.
Consumers believe more health care = better care.
“Clearly, consumers will revolt if evidence-based
efforts are perceived as rationing or as a way to
deny them needed treatment. … A necessary
condition for effective communication, after all, is
to start where your audience is—even if that is not
where you hoped or expected it to be.”
Evidence that consumers are skeptical about evidence-based health care.
Carman KL et al. Health Affairs 2010
Consumer-centered journalism –
like patient-centered care – can help people
understand and deal with the clash between:
• Recommendations for
• What we can prove
• Grasping uncertainty and
helping people apply
critical thinking to
Decision-making by an
What we believe, wish, or hope
Promoting false certainty
where it does not exist