Digital communications bring opportunity and risk to the therapeutic relationship. Doctors and other health professionals can learn to collaborate in person and online to protect informed decision making. Modified slightly from a talk August 8 2019 at Brigham & Women's Hospital/Dana-Farber Cancer Institute.

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

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

23. Academic Medicine
Science
Natural News
Goop
Dr. Oz
Serendipitygreece.com

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

27. Means
Digital
Content
Websites
Public
Patient
Centric
Doctor
Centric
Mobile
Apps
Texting EHR

28. Gallup, Dec 2018
N=1025

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

36. #radonc Journal Club, 2015

37. #radonc Network Analysis
2014

38. #radonc Network Analysis
2017

39. #radonc Network Analysis
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

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]

47. Digital ‘Echo Chamber’

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