The rise of online fake news on social media highlights an increasing problem. This talk, given at University of Michigan, explores why health professionals have a professional obligation to ensure patients get accurate, understandable health information.
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Cancer Care in a Post-Truth World: A Call for Clear Voices
1. Cancer Care in a
Post-Truth World
A Call for Clear Voices
Matthew Katz, MD
March 2017
2. Disclosures
Medical Director of Radiation Medicine, Lowell General
Hospital
Founder, nonprofit blog Radiation Nation
Cofounder, #radonc journal club
Communications Committee, Massachusetts Medical
Society
Volunteer for ASTRO, ASCO
No financial disclosures
4. Who Do You Trust in Cancer Care?
http://bit.ly/2mQwRYU
5. Fake News in 2016 Presidential Election
Fake news traffic
disproportionately by
social media
156 fake articles shared
37.9 million times
Fake news itself not
enough to change
outcome
Allcott and Gentzkow, http://stanford.io/2mYjJjC 2017
7. Hippocrates
“I will use treatment to help the
sick according to my ability
and judgment, but never with a
view to injury or wrong-doing”
“Into whatsoever houses I
enter, I will enter to help the
sick”
Maimonides
“Grant me the strength, time
and opportunity always to
correct what I have acquired,
always to extend its domain;
for knowledge is immense and
the spirit of man can extend
indefinitely to enrich itself daily
with new requirements.”
8. Why Doctors Need to Be Online
• Patients and caregivers are increasingly
online, seeking help and support
• If clinicians don’t engage online, expect more
influence on health decisions by
• Peers and family
• Fearmongerers, opportunists
• Industry (Direct-to-consumer)
• Government
11. Elements of Shared Decision-Making
Patient knowledge
Explicit encouragement of patient participation
Appreciation of the patient's ability to play an active
role in decision
Awareness of choice
Time
Fraenkel & McGraw, J Gen Intern Med. 2007
15. Access issues
Poor broadband access with
lower age, higher income,
education
More likely smartphone
dependent if non-white, lower
income, <HS education
16. Poor Access to Us Internet
Cancer patients often
report getting too little
information
15.9% of 32K surveyed
had at least one barrier to
access
43% used internet for
health information; linked
to lack of access
Amante et al, J Med Internet Res 2015
17. Googling Cancer
Varies by country (highest in U.S.), some
topics rising 2004-2014 on Google Trends
“symptoms of cancer”
“stage 4 cancer”
“signs of cancer”
>45% have used internet for self-diagnosis
Foroughi et al, JMIR Cancer 2016
Moore et al, http://scholarlyrepository.miami.edu/
18. Anecdote
Powerful stories can drive decisions
Blogs, online forums are common places to
find anecdotes
Online stories tilt toward negative outcomes
20. Who is Prone to Anecdote?
Analysis of 2012 Pew survey focused on
who searched for anecdotal data
1895 of 3014 (62.8%) answered yes or no;
other 37.2% refused and excluded
Binomial logistic regression analysis for
sociodemographic data, health status,
information seeking behavior
Mathadil et al, Proc Human Factors Ergonomics 2014
21. Independent Factors for Looking at
Anecdotal Information Online
Category Variable OR Chi-square
Gender Male 0.95
21.73
Female 1
Age Older (1yr) 0.98 204.37
Education ≤ High school 0.48
164.43Some college 0.64
College 4 yrs+ 1
Health Status Poor 1
23.64
Fair 0.85
Good 0.72
Excellent 0.61
Public report seeking Yes 3.53
718.42
No 1
Mathadil et al, Proc Human Factors Ergonomics 2014
22. Fake News
Fabricated stories create confusion
64% say great amount, 88% some or great
More confusion for
Higher income, higher education, younger age
61% only somewhat or not confident they can
identify fake news
23% have shared fake news (7% deliberately)
Source: Pew Research, 12/2016
N=1002
23. Source: Katie Forster, http://www.independent.co.uk/
• >50% of top 20 stories on Facebook with “cancer” in headline were false
• Top = dandelions can boost immune system, cure cancer
24. Jesse James Principle
Source: Barthel et al, http://pewrsr.ch/2mrnTRH Source: Gottfried& Shearer, http://pewrsr.ch/2lTpstQ
N=2035
N=4654
28. Overload is common
More access = less overload
27% in 200620% 2016
Big divide by
education (44% ≤HS vs. 24% College+)
income (46% <$30K vs. 27% ≥$75K
# Access
Modes
Overload Trouble finding
information
Confident in ability to
find information
0 37% 50% 30%
1 25% 47% 76%
2 14% 35% 91%
3 14% 24% 97%
Pew Internet, http://pewrsr.ch/2mjqOyI
Access = broadband, tablet, mobile phone N=1520
29. Cancer information overload (CIO)
HINTS survey of 6369 subjects in 2003
148-item survey
3011 cancer information seekers
62% with personal or family history of cancer
91% w/health insurance
75% 35+ years old
68% women
Logistic regression evaluating CIO
Kim et al, Information Res 2007
30. Univariate Predictors of CIO
Variable Higher risk of CIO X2
p-value
Education ≤ High school vs Some College vs
College grad
45.3 <0.001
Household income <$25K vs 25-50K vs >50K 21.3 <0.001
Employment Out of work, Retired vs Employed/Student 19.2 <0.01
Perceived
health status
Poor vs Good vs Excellent 24.0 <0.001
Depression High vs Moderate vs None/Low 30.5 <0.001
Media attentiveness Low vs High 10.5 <0.001
Knowledge about
cancer
Low vs High 15.3 <0.001
Cancer literacy Low vs High 100 <0.001
Concern re: quality of
cancer information
Some/Strong vs Little/None 95.3 <0.001
Search expertise Low vs High 101.1 <0.001
Search Frustration High vs Low 76.3 <0.001
Kim et al, Information Res 2007
31. Multivariate Predictors of CIO
Variable Odds Ratio p-value
Education (any college vs none) 0.62 (0.38-0.86) <0.001
Concern about information quality
(high vs low) 1.61 (1.41-1.81) <0.001
Search expertise (high vs. low) 0.64 (0.42-0.87) <0.001
Cancer literacy (high vs low) 0.55 (0.31-0.79) <0.001
Kim et al, Information Res 2007
Caveat: Older data, before social media
33. You aren’t anonymous
Internet searches may
expose your
information
65% had tracking
elements, avg 6-7
Result = exposure to
targeted ads (DTCA)
Entity Has 3rd
party
tracking
Shares search
terms w/3rd
parties
New York Times Yes Yes
Fox News: Health Yes Yes
Drugs.com Yes Yes
Men’s Health Yes Yes
Health.com Yes Yes
Weight Watchers Yes No
WebMD Yes No
Nat’l Institutes Health No No
FDA No No
CDC Yes No
Nat’l Cancer Institute Yes No
PubMed Yes No
MedlinePlus Yes No
Medscape No No
MedicalNewsDaily Yes Yes
Mayo Clinic No No
NEJM No No
JAMA No No
JAMA Internal Medicine No NoHuesch MD, JAMA Internal Med 2013
34. De-Anonymity on Social Networks
Can link browsing
history to social media
profiles
72% success in de-
anonymizing 374
people
86% with 50-75 URLs
71% with 25-50 URLs
Easier with G+,
Facebook
Geekculture.com, http://bit.ly/2lJzoWa Su J et al, World Wide Web conference 2017
36. DTCA undercuts Provider Trust
Survey at Dana-Farber of 348 patients w/breast,
hematologic malignancies
86% were aware of cancer-related direct-to-
consumer advertising (DTCA)
21% via internet vs. >2/3 for TV, magazine
Ads were easy to understand (89%) but
11% less confident in their provider
Only 17% discussed DTCA with treating clinician
Abel et al, J Clin Oncol 2009
37. We are not innocent
Cancer centers: $173M on ads
in 2014
35 NCI-cancer centers:
$900 - $13.9M
Ads highlight benefits more
than risks (27% vs 2%)Vater et al, Annals Int Med 2014
Vater et al, Annals Int Med 2016
Organization $M in 2014
Cancer Treatment Ctrs of
America
101.7
MDACC 13.9
MSKCC 9.1
Fox Chase 3.5
Texas Oncology 3.4
38. Possible Impact of #Ryancare*
Poor have less money to
afford better access
Less iPhones = less access
esp. non-white, lower
income, <HS education
As people get sicker, more
prone to anecdotal
information
More digital targeting of
wealthier patients for $
Employers get your genetic
health information
GINA repeal, no replace?
* #Ryancare = House GOP bill, American Health Care Act, 3/12/17
39. What patients and doctors* deserve
Mr. John Doe ( General Manager )
Source: subatomicdoc, Flickr.com
Any social media tool should improve or preserve this covenant
40. Hippocrates Maimonides
“I will use treatment to help the
sick according to my ability and
judgment, but never with a view
to injury or wrong-doing”
“Into whatsoever houses I enter,
I will enter to help the sick”
“Grant me the strength, time
and opportunity always to
correct what I have acquired,
always to extend its domain;
for knowledge is immense
and the spirit of man can
extend indefinitely to enrich
itself daily with new
requirements.”
Your oath holds true online,
wherever you extend your domain
41. What the Public Expects of Us
• Quality as clinician
• Workmanship
• Citizenship
Professionalism based upon
• Confident
• Reliable
• Composed
• Accountable
• Dedicated
Doctors* expected to be
* Applies to all professionals
Chandratilake et al, Clin Med 2010
42. We are trusted
People may connect
better with people, not
organizations
Individuals’ voices can
humanize
Clinical information
Research news
Institutional messages
Nurses #1 for 15 years
straight
43. What can we do?
Individually
Listen
Demonstrate integrity
Simplify access
Share the truth effectively
Collectively
Organize the internet
Organize ourselves
Inoculation
44. Listening starts with your patients
Ask if they’ve been online at the time of consultation
Do a health information review of systems
http://bit.ly/2mQxFNo
Listening helps you understand how to talk in plain
language, not medical-ese
45. Listening Well = Diversity + Civility
Learn from
Cancer patients with no medical
background
People who fundamentally
disagree with you
Interacting only w/ similar
people = confirmation bias silo
Avoid coming across as
Elitist
Biased
Intolerant of other opinions
Out of touch
46. Demonstrate Integrity
Ethics before metrics
Online should represent
our best selves
Use digital tools, don’t be one
48. More Honey, Less Vinegar
Calm, Respectful
Avoid trash talk
Initiating
Responding
Haters be haters
Don’t become one
Don’t feed the trolls
Tom Brady, circa 1998
49. Focus
Pick one topic you would
defend in any forum
Patient education
Genetic testing for breast cancer
Trials for N1 prostate cancer
Supportive care
Patient-centered works better
than professional-centered
50. Transparency
86% of NCCN authors have
industry support
Mean $10K general payments
Mean $230K research funding
83% of advocacy nonprofits
have industry funding
37% focused on cancer
36% have industry executive
on governing board
Oncologists using Twitter
more likely to have COIs
@charlesornstein et al, http://bit.ly/Dollars4Docs
Mitchell et al, JAMA Oncol 2016
McCoy et al, NEJM 2017
Tao et al, JAMA Int Med 2017
51. Simplify Access, Lessen Overload
Curate content for
your patients with a
single link
Pick sites that don’t
track
Improves trust
Source: https://www.one-tab.com/
Real source: Patricia Anderson, @pfanderson
52. Communicate Truth Effectively
Starts by listening well
Plain language, not
medical-ese
Learn mechanics of
marketing
Tell stories…but careful if
about your patients
Stick to the truth!
Libel is a “thing”
Pamela Wible, idealmedicalcare.org http://bit.ly/2mTD7iD
55. Present Information Clearly
Define key actionable
decisions
Provide data visually
Test and use evidence-
based methods
Zikmund-Fisher et al, Med Decis Making 2010
Fagerlin et al, JNCI 2011
56. Organizing the Internet for Health
Internet
Wild
West Health
Information
Nature’s laws affirm
instead of prohibit. If you
violate her laws you are
your own prosecuting
attorney, judge, jury and
hangman.
- Luther Burbank
57. Hashtags on Twitter
Used to identify specific
data
Twitter started using for
trending topics in 2010
“Narrowcasting” on a
channel – but interactive
Can coordinate live chats
on a specific topic
Source: weknowmemes.com http://bit.ly/1lwUQ7S
58. #bcsm – Breast Cancer & Social
Media
Weekly live Twitter chats since July 4, 2011
Organized by two advocates, breast surgeon
Focus on advocacy, survivorship, support,
metastatic breast cancer, new research
60. Cancer-Specific Content on
Twitter
High signal:noise ratio
760K tweets, 117K users
Katz et al, JAMA Oncol 2016
* Katz et al, unpublished via Symplur.com
Update* = 1.33 M tweets by 190K
Twitter users
~681K (51%) shared hyperlinks to
more information
61. Organizing Ourselves
Cancer professionals can
curate, support online
health information
Develop virtual teams
#DoYourJob
67. Fake News Vaccination
Tested what inaccurate
‘countermessages’ spread
misinformation on climate change
(N=1000)
Randomized survey to assess if
sharing scientific consensus
could counteract misinformation
2167 surveyed
Covered 20 topics, only climate
change topic randomized
Pre and post test on 0-100 scale
for confidence in opinion
Van der Linden et al, Global Challenges 2017 http://bit.ly/Inoculate
68. Fake News Vaccination
Consensus,
countermessage had
expected effect
Neutralize each other given
together
Inoculation message worked
More detail = more effective
Republicans bigger
response to consensus
alone but two together =
negative, not neutral
Democrat, Independent
behaved similar to generalVan der Linden et al, Global Challenges 2017 http://bit.ly/Inoculate
69. Tyranny of Fake News if We’re Silent
Should be tested with
health information
Can’t eliminate the
negative
Must accentuate the
positive
71. Derivative Benefits of Doing Good
Online engagment may help you:
Coordinate Care
Collaboration
Networking
Education
Career Opportunity
Reputation Management
All are secondary to helping your patients and covenant of trust
72. Summary
Cancer patients deserve reliable
health information
Fake or inaccurate news is
widespread
Health care professionals are
trusted by the public
We can communicate better, in
clinic and online
More research, teamwork needed
“The secret of the care of the patient
is in caring for the patient” – Francis Peabody
73. Thank You
Dr. Ted Lawrence, Dr. Reshma Jagsi, Stephanie Carroll
Patricia Anderson
Hashtag friends and research collaborators
74. Questions?
You’re invited to contact me:
Twitter: @subatomicdoc
Slide deck available with others on Slideshare
http://bit.ly/subatomicdocTalks
Notas do Editor
All-natural breakthroughs: Tea, Coffee can cure cancer
Social media = powerful information tools
Healthcare most important
We have a duty to protect the vulnerable
Compelling stories
HINTS = Health Information National Trends Survey
Emotion &gt; Information in ads
- To effectively learn how to persuade people’s opinion toward the truth, you have to understand where they’re coming from.
- Not simply to refute their positions, but to recognize some of the traces of truth that attract them to inaccurate information
Radiation oncology is particularly prone to hazard
Maybe we should hyperlink our online professional profiles to Dollars for Docs
Effective communication can be learned
New class at University of Washington
Adjuvant Online! vs. simplified graph focusing on survival
The Internet is not HIPAA compliant
Free-wheeling experimentation/mashups may work for lolcatz, but it doesn’t create good environment for scientific facts
Some imposed structure for reliable health information is both ethical and practical
Some things in biology and medicine just aren’t amenable to crowdsourcing
Hashtags let you “narrowcast” and create communities based upon interest
- Why shouldn’t every disease have ability to create community?
Of the 1.33M tweets, 20% HCPs, 20% patients, 5% caregivers, 1% researchers
Same concept motivated organizing tags for professionals. Done so far in oncology, radiology, pathology, urology
If we create a structured system, we need to be there
Otherwise spammers will find it and just target people differently
#radonc journal club
Started with Brandon Mancini, now with Umichigan in Grand Rapids
Dan Wahl discussed JCO article on liver SBRT this past
Radiation oncology is in the basement
Consensus = 97% of scientists concluse human-caused climate change is happening
Countermessage = no consensus humans responsible for climate change
General inoculation = “virtually no disagreement humans are causing climate change”
Specific inoculation = Add more factual detail to general inoculation
What is the alternative? We are ethically obligated to provide patients accurate information, in person and online
Ethical use of social media is unlikely to get you into trouble
Learned skill, just like many others we have cultivated in medicine
Reshma Jagsi & Ted Lawrence, and entire U Michigan staff
Patricia Anderson, Audun Utengen, and other collaborators on cancer tag ontology