International Shared Decision Making Conference Lima, Peru June, 2013

1. What Consumer-Centered Journalism Could
Do to Promote Patient-Centered Care
Gary Schwitzer
Publisher

2. 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
unnecessarily.”

3. A Prompt to the Web: The Media & Health Information
Seeking Behavior
- PLoS One 2012
“longstanding concerns about quality of info in traditional media and
growing concern about quality of info available on internet and newer
social media.”
------------------------------------
Behavioral Consequences of Conflict-Oriented Health News
Coverage: 2009 Mammography Guideline Controversy & Online
Information Seeking
- Health Comm 2011
“compelling evidence that news coverage can impact people’s health
information-seeking behavior, which may be the first step toward actual
health behavior.”

5. We review stories
that include claims
about…
• Medical treatments
• Tests
• Products
• Procedures

6. Our criteria: Does the story
explain…
• 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?
69% 
66% 
65% 
61% 
57% 
Percent
unsatisfactory
after 1,900
story reviews –
7 years

7. News stories often paint a
kid-in-candy-store picture
of U.S. health care
Terrific
Risk-free
Without a price tag

8. “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
stories”
Americans Talk About Science and Medical News: The National Health Council Report
Roper Starch survey of 2,256 adults – December 1997

9. “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

10. 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.

11. 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?
• Diets?
• Advance directives, end-of-life issues?
• “Cures..breakthroughs…dramatic…promising” interventions

12. How many of you have had patients
come in asking about such things
they heard in the news?

13. 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

14. Learn from John Ioannidis about
pitfalls of steady diet of journal stories
PLoS Med 2005; 2(8): e124

15. 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]

16. 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
of treatment
Common flaws

17. Ignore
or
Minimize
Potential Harms

18. “Media’s most
troublesome
trend” award
THE WINNER IS:
(often involving this gland)
Award for best supporting roles:
• Breasts
• Lungs
• Arteries

19. “All screening programs do harm;
some do good as well.”
- Dr. Muir Gray
All screening stories would be better if they simply stated:

20. Anecdotes of
those who make
a rational choice
not to be
screened – or
those who were
screened and
regret it
The tyranny of the anecdote
in screening news stories:
Whom do we model?

22. Prizes for Prostates

23. What is the quality of
the shared decision-
making encounter…
…as mammograms
are promoted with
wine, cheese, fondue,
chocolate
fountains, pink
treats, pink
lemonade, massages,
facials, manicures/ped
icures, paraffin hand
treatments, beauty
consultations, etc. ?

24. Sharon Begley reported for Newsweek
magazine:
“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.”

26. • 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
prophylactic mastectomy
• Reported on the shared decision-making program at UCSF that
helped her understand the tradeoffs.
THAT IS GOOD JOURNALISM

28. Men who didn’t have
SDM prostate screening
experience:
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.”
Profiled by
Shannon Brownlee
in New York Times
magazine piece,
“Can Cancer Ever
Be Ignored?”

29. 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
procedures.”

30. The marketing of screening
In 2010 after the National Lung Screening Trial
results were released, the American Cancer
Society said:
"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."

31. 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.”

33. • 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

35. If we don’t improve discussion on screening, we may
never improve public dialogue on expensive new
technologies – “Gizmo Idolatry”

37. JOSH BILLINGS (PEN NAME OF HUMORIST
HENRY WHEELER SHAW, 1818 – 1885)
Why?
Because there are harms in making people more
hopeful or more frightened than evidence and
rational thinking would warrant.

38. 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

39. Consumer-centered journalism –
like patient-centered care – can help people
understand and deal with the clash between:
• Science
• Evidence
• Data
• Recommendations for
entire population
• What we can prove
• Grasping uncertainty and
helping people apply
critical thinking to
decision-making issues
 Intuition
 Emotion
 Anecdote
 Decision-making by an
individual
 What we believe, wish, or hope
 Promoting false certainty
where it does not exist

40. @Thank you
gary@healthnewsreview.org