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Cancer Care in aPost-Truth World
A Call for Clear Voices
Matthew Katz, MD
March 2017
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
Who Do You Trust in Cancer Care?
Who Do You Trust in Cancer Care?
http://bit.ly/2mQwRYU
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
Challenge of a Post-Truth World
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.”
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
Patient Hierarchy of Needs
Source: Matthew Katz, flickr.com
WHO Definition of Health
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
Barriers for Patients & Caregivers
Access
Accuracy Anecdote Fake News Celebrity Endorsement
Information Overload
Privacy Breaches
Access
Where People Share Their Care
Access issues
Poor broadband access with lower age, higher income, education
More likely smartphone dependent if non-white, lower income, <HS education
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
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 2016Moore et al, http://scholarlyrepository.miami.edu/
Anecdote
Powerful stories can drive decisions
Blogs, online forums are common places to find anecdotes
Online stories tilt toward negative outcomes
Anecdote ~ Selection Bias?
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
Independent Factors for Looking at Anecdotal Information Online
Category Variable OR Chi-squareGender Male 0.95
21.73Female 1
Age Older (1yr) 0.98 204.37Education ≤ High school 0.48
164.43Some college 0.64College 4 yrs+ 1
Health Status Poor 1
23.64Fair 0.85Good 0.72Excellent 0.61
Public report seeking Yes 3.53718.42
No 1
Mathadil et al, Proc Human Factors Ergonomics 2014
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
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
Jesse James Principle
Source: Barthel et al, http://pewrsr.ch/2mrnTRH Source: Gottfried& Shearer, http://pewrsr.ch/2lTpstQ
N=2035N=4654
Celebrity Opinion Matters
Source: Twitter.com
Where are healthcare’s voices?
Group % on Twitter
Followers Tweets % on Facebook
Likes % on YouTube
State Medical Societies 90% 1094 (0-
36116)1540 (0-28493) 84% 478 (0-
7934) 26%
State Hospital Associations 82% 1524 (0-
10462)1067 (0-28549) 50% 489
(0-13267) 34%
Natl. Orgs 98% 15672 (0-875K)
6434(0-21116) 92% 21190
(0-556K) 92%
Hospitals 100% 10562 (562-1.26M)
7251 (474-29197) 98% 24393
(0-1.5 M) 100%
Industry 96% 22298(0-926K)
2758(0-40514) 70% 33057
(0-6.97M) 86%
Source: Matthew Katz, Feb 2017 (unpublished)
N=250 organizations, 50 each category- Data collected Feb 2016
Information Overload
Jessica Hagy, thisisindexed.com, 10/9/2009
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
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
Univariate Predictors of CIO
Variable Higher risk of CIO X2 p-valueEducation ≤ High school vs Some College vs
College grad45.3 <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
Multivariate Predictors of CIO
Variable Odds Ratio p-valueEducation (any college vs none) 0.62 (0.38-0.86) <0.001Concern 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) <0.001Cancer literacy (high vs low) 0.55 (0.31-0.79) <0.001
Kim et al, Information Res 2007
Caveat: Older data, before social media
You are what you
Surf Share
flowingdata.com
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
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
Micro-targeting your biases for $
Source: Forbes.com
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
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 2014Vater et al, Annals Int Med 2016
Organization $M in 2014
Cancer Treatment Ctrs of America
101.7
MDACC 13.9MSKCC 9.1Fox Chase 3.5Texas Oncology 3.4
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
What patients and doctors* deserve
Mr. John Doe ( General Manager )
Source: subatomicdoc, Flickr.com
Any social media tool should improve or preserve this covenant
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
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
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
What can we do?
Individually Listen Demonstrate integrity Simplify access Share the truth effectively
Collectively Organize the internet Organize ourselves Inoculation
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
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
Demonstrate Integrity
Ethics before metrics
Online should represent our best selves
Use digital tools, don’t be one
Humility Saves Lives
Simon Wardley, blog.gardeviance.org
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
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
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 2016McCoy et al, NEJM 2017Tao et al, JAMA Int Med 2017
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
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
Continuing Medical Education
New University of Washington course
Speak Truth to Power...with Data
Source: Twitter.com
Present Information Clearly
Define key actionable decisions
Provide data visually
Test and use evidence-based methods
Zikmund-Fisher et al, Med Decis Making 2010Fagerlin et al, JNCI 2011
Organizing the Internet for Health
Internet
WildWest 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
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
#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
Symplur.com, http://bit.ly/1cAmuR7 New chat+tag = #gencsm for genetic cancers/cancer risk
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
Organizing Ourselves
Cancer professionals can curate, support online health information
Develop virtual teams
#DoYourJob
Twitter at Annual Meetings, 2016
Matthew Katz, Symplur.com
Share beyond the meeting
Bik HM, Goldstein MS. PLOS Biol 2013
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
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 general
Van der Linden et al, Global Challenges 2017 http://bit.ly/Inoculate
Tyranny of Fake News if We’re Silent
Should be tested with health information
Can’t eliminate the negative
Must accentuate the positive
Legitimate risks, not enough to stop us
QuantiaMD.com, 2011 http://bit.ly/OKR00w
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
SummaryCancer 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
Thank You
Dr. Ted Lawrence, Dr. Reshma Jagsi, Stephanie Carroll
Patricia Anderson
Hashtag friends and research collaborators
Questions?
You’re invited to contact me: Twitter: @subatomicdoc
Slide deck available with others on Slideshare http://bit.ly/subatomicdocTalks
