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Protecting Informed
Decision Making In Cancer
Care through Online
Physician Engagement
Matthew Katz, MD
August 2019
Disclosures
 Partner, Radiation Oncology Associates PA
 Stock in
 Dr. Reddy Laboratories
 Healthcare Services Group
 Mazor Robotics
 U.S. Physical Therapy
 No other disclosures for other healthcare or social
media companies
Keys to 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
Keys to 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
 Access to accurate information
 Trust in the source of information
Tools to Create, Spread Ideas
“Medical legitimacy arises from both collective expertise and individual trust”
Problematic Trends:
•Increasing corporatization of medicine
•Decline in physician autonomy in healthcare organizations
•Decline in public trust of organizations
•Rise of alternate sources of “authority” easily found online
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
Hippocrates Maimonides
“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 wherever you extend your domain
Overview
 Doing nothing hurts patients and doctors
 Organizing online may counteract misinformation
 Opportunities for action and research
Accessing Health Information
 Traditional Flexner Model
 “Doctor Knows Best” as the trusted professional
 Competing Information Sources
 Peers
 Direct to Consumer Advertising
 Healthcare Industry
 Alternative Medicine Industry
 Press/Media
 PubMed
Fake News
 Fabricated stories create confusion
 64% 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
Pew Research, 12/2016N=1002
Source: Katie Forster, http://www.independent.co.uk/
• >50% of top 20 stories in 2016 with “cancer” in headline were false
• Top story = dandelions boost immunity, cure cancer
Prostate Cancer on YouTube
 Analyzed 150 English language videos
 75 “prostate cancer screening”
 75 “prostate cancer treatment”
 Assessed with validated instruments
 DISCERN for quality, bias
 PEMAT to evaluate understandability, actionability
 Subset of 50 analyzed with Flesch-Kincaid readability of
written transcripts
 Calculated Pearson correlation coefficients between
content quality and views, thumbs up
Loeb et al, Eur Urol 2019
Prostate Cancer on YouTube
 77% with potentially misinformative or biased content
 6.4 million unique viewers
 19% discuss complementary medicine
 27% with commercial bias
 Median 12th grade level content
 Negative correlation between scientific quality and
 views/month (-0.24, p=0.004)
 thumbs up/view (-0.20, p=0.015)
Loeb et al, Eur Urol 2019
Rumor Dissemination on Twitter
 126,000 rumor cascades shared by 3M Twitter
accounts, 2006-2017
 All assessed by six fact-checking organizations
 Cascade = unique tweets only, retweets measure
‘depth’
 ~10% science & technology topics
 Analyzed diffusion dynamics of cascades by true, false
or ‘mixed’ content
Vosoughi et al, Science 2018
False rumors spread farther, faster
 False, mixed rumors had
higher % 1-1000
cascades
 True rumors take six times
as long to reach 1500
people
 Users spreading false news
had fewer followers
Vosoughi et al, Science 2018
CCDF = fraction of rumors
with certain # of cascades
Direct to Consumer Advertising (DTCA)
 Survey of 348 DFCI patients w/breast, hematologic
malignancies receiving chemotherapy or seen at follow-up
within 3 months of treatment
 Prompted about DTCA exposure in past 12 months
 Analyzed awareness, categorized many responses as
agree/disagree assessing
 Bivariate associations evaluated with Pearson’s chi-square,
Logistic regression to assess influences on awareness of
DTCA
 Estimated DTCA yield (Awareness x Discussion x Rx Δ)
Abel et al, J Clin Oncol 2009
DTCA undermines Provider Trust
 Cohort
 87% female, 64% >50 years, 93% Caucasian
 74% breast cancer, 25% hematologic, 1% other
 65% ranked care 10 on 1-10 scale
 86% aware of cancer-related DTCA
 21% via internet vs. >2/3 for TV, magazine*
 Multivariate: Awareness associated with
 TV exposure of 3+ hours/day (OR 2.08, 95%CI 1.01-4.31)
 Increasing age (OR 0.63, 95% CI 0.49-0.87)
Abel et al, J Clin Oncol 2009*Caveat: Before social media
DTCA undermines Provider Trust
17.3% discussed DTCA with treating clinician
 96.2% satisfied with conversation
 19.2% received prescription for advertised medication
Estimated prescription ‘yield’ of DTCA = 2.9%
Abel et al, J Clin Oncol 2009
Perceptions Stratified by Education
Cancer Center Advertising
 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
Radiation Oncology
 Unknown even to other health professionals
MS4
(n=404)
PCP
(n=43)
Did RO
Rotation
(n=42)
Radiation almost always palliative 11% 16% 2%
Can’t re-irradiate the same area 12% 33% 10%
Patient emits low levels of radiation after EBRT 49% 34% 14%
Radiation not used in pediatric cancer because
of second malignancy risk
24% 14% 7%
Estimate risk of 2nd malignancy is <2% annually 61% 64% 86%
Zaorsky et al, IJROBP 2016
Academic Medicine
Science
Natural News
Goop
Dr. Oz
Serendipitygreece.com
Organize Health Professionals Online
 Hypothesis: Coordinated efforts to
counteract misinformation are more effective
 Strategy
 Find people with similar interests
 Organize, train them to communicate effectively
 Inoculate public against misinformation that
undermines informed health decisions
Harnessing Free Time
 People can use free time
to collaborate online
 Lower barriers for social
action
 Elements for Success
 Means
 Motive
 Opportunity
 Culture
Means: Sutton’s Law
 Why go online to provide health
information? Because that’s where people
look for it
Means
Digital
Content
Websites
Public
Patient
Centric
Doctor
Centric
Mobile
Apps
Texting EHR
Gallup, Dec 2018
N=1025
Twitter: Public, open access
Digital
Content
Websites
Public
Patient
Centric
Doctor
Centric
Mobile
Apps
Texting EHR
Hashtags as interactive channels
 # = hashtag
 #breastcancer creates searchable information stream with
that term
 Listen, participate in public conversations about
health
 Can create communities of interest
 Open platforms permit all stakeholders to participate
#bcsm = breast cancer social media
Symplur.com
Katz et al, JAMA Oncol 2016
Structured Disease-Specific Hashtags
Katz et al, JCO Clin Cancer Inform 2019
Attracting Health Professionals
 Focus cognitive surplus online for
 Education
 Networking
 Advocacy
 Use hashtag #radonc starting 2014
#radonc Monthly Activity
Prabhu et al, ASTRO 2019
#radonc Journal Club, 2015
#radonc Network Analysis
2014
#radonc Network Analysis
2017
#radonc Network Analysis
2019
Organizing the Internet
Pereira et al, ASTRO 2019
Culture
 Ability to communicate necessary but insufficient
 Digital communications should
 Reflect our commitment to patients
 Favor collaboration, education over promotion
 Components
 Individual
 Communities/Organizations
Communication & Social Media Should
 Complement or
improve your clinical
practice of medicine
 Maintain, build trust
 Enrich your life rather
than becoming a
perceived necessity
Patient-Doctor DyadPatient Doctor
What the Public Expects
• 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
Conflicts of Interest – Who to Trust?
 44.3% of hematologist-oncologists on Twitter had
>$1000 in industry payments in 2014
 67-83% of nonprofit patient advocacy organizations
receive funding from for-profit industry
Tao et al, JAMA Intern Med 2017
Rose et al, JAMA Intern Med 2017
McCoy et al, NEJM 2017
Potential Privacy Breaches
[Edited to exclude unpublished data under review]
Digital ‘Echo Chamber’
Inclusion = more people to help
Source: USCJ.org
Digitally Ready, Maintaining Values
 Self-organizing, rapid experimentation, collect data
 Guidelines for speed, experimentation that maintain
integrity
 Transparency, accountability at all levels
 Develop systems to identify and prevent abuses
Westerman et al, MIT Sloan Management Review, 2019
What can we do now?
 Encourage ethical people to be active online
 Amplify their voices
 Introverts, Ambiverts also thrive
 Identify potential leaders, collaborators
 Listen and learn how others communicate
 Patients, caregivers
 Misinformation sources
 Trusted sources
 Collaborate, share quality health content
 Research Collaboration
Research Questions
 What communication strategies work best for informed
decision making?
 Disease-specific, patient-specific?
 Do hashtags organize content and communities of
interest?
 How do digital doctors learn effective public
communication?
 How do we identify and counteract misinformation
quickly?
 How do we organize and pool resources effectively?
Why We Must Try
“The secret of the care of the patient
is in caring for the patient” – Francis Peabody
Summary
 Patients deserve reliable, understandable health
information
 Doctors deserve training for the digital era
 Inaction risks erosion of the therapeutic relationship
Thank you
 Dr. Haas-Kogan, Dr. Martin, Dr. Nguyen
 Social media collaborators
Questions?
Please contact me at @subatomicdoc

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Protecting Informed Decision Making

  • 1. Protecting Informed Decision Making In Cancer Care through Online Physician Engagement Matthew Katz, MD August 2019
  • 2. Disclosures  Partner, Radiation Oncology Associates PA  Stock in  Dr. Reddy Laboratories  Healthcare Services Group  Mazor Robotics  U.S. Physical Therapy  No other disclosures for other healthcare or social media companies
  • 3. Keys to 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
  • 4. Keys to 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  Access to accurate information  Trust in the source of information
  • 5. Tools to Create, Spread Ideas
  • 6. “Medical legitimacy arises from both collective expertise and individual trust” Problematic Trends: •Increasing corporatization of medicine •Decline in physician autonomy in healthcare organizations •Decline in public trust of organizations •Rise of alternate sources of “authority” easily found online
  • 7.
  • 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
  • 9. Hippocrates Maimonides “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 wherever you extend your domain
  • 10. Overview  Doing nothing hurts patients and doctors  Organizing online may counteract misinformation  Opportunities for action and research
  • 11. Accessing Health Information  Traditional Flexner Model  “Doctor Knows Best” as the trusted professional  Competing Information Sources  Peers  Direct to Consumer Advertising  Healthcare Industry  Alternative Medicine Industry  Press/Media  PubMed
  • 12. Fake News  Fabricated stories create confusion  64% 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 Pew Research, 12/2016N=1002
  • 13. Source: Katie Forster, http://www.independent.co.uk/ • >50% of top 20 stories in 2016 with “cancer” in headline were false • Top story = dandelions boost immunity, cure cancer
  • 14. Prostate Cancer on YouTube  Analyzed 150 English language videos  75 “prostate cancer screening”  75 “prostate cancer treatment”  Assessed with validated instruments  DISCERN for quality, bias  PEMAT to evaluate understandability, actionability  Subset of 50 analyzed with Flesch-Kincaid readability of written transcripts  Calculated Pearson correlation coefficients between content quality and views, thumbs up Loeb et al, Eur Urol 2019
  • 15. Prostate Cancer on YouTube  77% with potentially misinformative or biased content  6.4 million unique viewers  19% discuss complementary medicine  27% with commercial bias  Median 12th grade level content  Negative correlation between scientific quality and  views/month (-0.24, p=0.004)  thumbs up/view (-0.20, p=0.015) Loeb et al, Eur Urol 2019
  • 16. Rumor Dissemination on Twitter  126,000 rumor cascades shared by 3M Twitter accounts, 2006-2017  All assessed by six fact-checking organizations  Cascade = unique tweets only, retweets measure ‘depth’  ~10% science & technology topics  Analyzed diffusion dynamics of cascades by true, false or ‘mixed’ content Vosoughi et al, Science 2018
  • 17. False rumors spread farther, faster  False, mixed rumors had higher % 1-1000 cascades  True rumors take six times as long to reach 1500 people  Users spreading false news had fewer followers Vosoughi et al, Science 2018 CCDF = fraction of rumors with certain # of cascades
  • 18. Direct to Consumer Advertising (DTCA)  Survey of 348 DFCI patients w/breast, hematologic malignancies receiving chemotherapy or seen at follow-up within 3 months of treatment  Prompted about DTCA exposure in past 12 months  Analyzed awareness, categorized many responses as agree/disagree assessing  Bivariate associations evaluated with Pearson’s chi-square, Logistic regression to assess influences on awareness of DTCA  Estimated DTCA yield (Awareness x Discussion x Rx Δ) Abel et al, J Clin Oncol 2009
  • 19. DTCA undermines Provider Trust  Cohort  87% female, 64% >50 years, 93% Caucasian  74% breast cancer, 25% hematologic, 1% other  65% ranked care 10 on 1-10 scale  86% aware of cancer-related DTCA  21% via internet vs. >2/3 for TV, magazine*  Multivariate: Awareness associated with  TV exposure of 3+ hours/day (OR 2.08, 95%CI 1.01-4.31)  Increasing age (OR 0.63, 95% CI 0.49-0.87) Abel et al, J Clin Oncol 2009*Caveat: Before social media
  • 20. DTCA undermines Provider Trust 17.3% discussed DTCA with treating clinician  96.2% satisfied with conversation  19.2% received prescription for advertised medication Estimated prescription ‘yield’ of DTCA = 2.9% Abel et al, J Clin Oncol 2009 Perceptions Stratified by Education
  • 21. Cancer Center Advertising  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
  • 22. Radiation Oncology  Unknown even to other health professionals MS4 (n=404) PCP (n=43) Did RO Rotation (n=42) Radiation almost always palliative 11% 16% 2% Can’t re-irradiate the same area 12% 33% 10% Patient emits low levels of radiation after EBRT 49% 34% 14% Radiation not used in pediatric cancer because of second malignancy risk 24% 14% 7% Estimate risk of 2nd malignancy is <2% annually 61% 64% 86% Zaorsky et al, IJROBP 2016
  • 24. Organize Health Professionals Online  Hypothesis: Coordinated efforts to counteract misinformation are more effective  Strategy  Find people with similar interests  Organize, train them to communicate effectively  Inoculate public against misinformation that undermines informed health decisions
  • 25. Harnessing Free Time  People can use free time to collaborate online  Lower barriers for social action  Elements for Success  Means  Motive  Opportunity  Culture
  • 26. Means: Sutton’s Law  Why go online to provide health information? Because that’s where people look for it
  • 29. Twitter: Public, open access Digital Content Websites Public Patient Centric Doctor Centric Mobile Apps Texting EHR
  • 30. Hashtags as interactive channels  # = hashtag  #breastcancer creates searchable information stream with that term  Listen, participate in public conversations about health  Can create communities of interest  Open platforms permit all stakeholders to participate
  • 31. #bcsm = breast cancer social media
  • 32. Symplur.com Katz et al, JAMA Oncol 2016
  • 33. Structured Disease-Specific Hashtags Katz et al, JCO Clin Cancer Inform 2019
  • 34. Attracting Health Professionals  Focus cognitive surplus online for  Education  Networking  Advocacy  Use hashtag #radonc starting 2014
  • 35. #radonc Monthly Activity Prabhu et al, ASTRO 2019
  • 40. Organizing the Internet Pereira et al, ASTRO 2019
  • 41. Culture  Ability to communicate necessary but insufficient  Digital communications should  Reflect our commitment to patients  Favor collaboration, education over promotion  Components  Individual  Communities/Organizations
  • 42. Communication & Social Media Should  Complement or improve your clinical practice of medicine  Maintain, build trust  Enrich your life rather than becoming a perceived necessity Patient-Doctor DyadPatient Doctor
  • 43.
  • 44. What the Public Expects • 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
  • 45. Conflicts of Interest – Who to Trust?  44.3% of hematologist-oncologists on Twitter had >$1000 in industry payments in 2014  67-83% of nonprofit patient advocacy organizations receive funding from for-profit industry Tao et al, JAMA Intern Med 2017 Rose et al, JAMA Intern Med 2017 McCoy et al, NEJM 2017
  • 46. Potential Privacy Breaches [Edited to exclude unpublished data under review]
  • 48. Inclusion = more people to help Source: USCJ.org
  • 49. Digitally Ready, Maintaining Values  Self-organizing, rapid experimentation, collect data  Guidelines for speed, experimentation that maintain integrity  Transparency, accountability at all levels  Develop systems to identify and prevent abuses Westerman et al, MIT Sloan Management Review, 2019
  • 50. What can we do now?  Encourage ethical people to be active online  Amplify their voices  Introverts, Ambiverts also thrive  Identify potential leaders, collaborators  Listen and learn how others communicate  Patients, caregivers  Misinformation sources  Trusted sources  Collaborate, share quality health content  Research Collaboration
  • 51. Research Questions  What communication strategies work best for informed decision making?  Disease-specific, patient-specific?  Do hashtags organize content and communities of interest?  How do digital doctors learn effective public communication?  How do we identify and counteract misinformation quickly?  How do we organize and pool resources effectively?
  • 52. Why We Must Try “The secret of the care of the patient is in caring for the patient” – Francis Peabody
  • 53. Summary  Patients deserve reliable, understandable health information  Doctors deserve training for the digital era  Inaction risks erosion of the therapeutic relationship
  • 54. Thank you  Dr. Haas-Kogan, Dr. Martin, Dr. Nguyen  Social media collaborators Questions? Please contact me at @subatomicdoc

Editor's Notes

  1. Great to be visiting 24 years ago started radiation oncology career with Dr. Baldini on a lung cancer research project
  2. Printing press: Reinforced and undermined Monarchy, Catholic Church Computers, esp. mobile: Democratizing global communications but challenging political systems and science
  3. Fiduciary responsibility Commitment to help patients, regardless of location Requires reinventing medicine to relearn how to serve the needs of patients
  4. 2% of true rumors reach 100 cascades vs. 8-9% of false, mixed rumors
  5. Different area: potentially misleading information through advertising 41-item survey, amalgam of validated instruments and some unique questions
  6. Emotion > Information in ads Obtained information from multiple sources Expenditures adjusted into 2014 dollars for comparison 890 cancer centers studied, 20 cancer centers accounted for 86% of all advertising. DFCI ranked #8, $1.8M
  7. - Survey of U.S. medical students years 1 and year 4 and PCPs. - 4004 surveyed, 26% response rate. - Questions ranged from knowledge about radiation therapy to clinical situations for its use.
  8. We can't afford to be silent, but we also need to learn how to communicate well because we're at a disadvantage trying to share the truth
  9. Variety of different ways to reach people. I’m just focusing on one potential route, social media.
  10. Our Opportunity: Health Professionals are Trusted. We are also more trusted than others in healthcare. Healthcare executives only receive high trust from 36%. Other data also show many people do not trust online information
  11. >750,000 tweets
  12. Hashtags let you “narrowcast” and create communities based upon interest - Why shouldn’t every disease have ability to create community?
  13. My motive: aggregate people to find the right ones willing to form a team. First is getting people into the same space.
  14. 14,371 participants, 155,000 tweets.
  15. Started with monthly journal club
  16. Be more than just a radiation oncologist
  17. - An influential Oregon E.R. physician on Twitter, Esther Choo, shared this tweet in early May. Feel good story but gives a first initial and a memorable story. - Reshared by189 others and set off a viral cascade of other health professionals sharing their own stories. ~45K in 2018, mostly around the event itself - Twitter Tailwinds in NEJM July 2018
  18. Need to interact with people with different opinions, perspectives Radiation oncology risks missing the opportunity to become better known and understood.
  19. Exclusion: academics in blue Inclusion: academics green, community MDs red, other HCPs yellow/orange, patients/advocates blue
  20. As long as we put the patient first, we’ll find strategies and tactics that work.
  21. Our patients deserve better, and so do we