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Protecting Informed Decision Making

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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.

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Protecting Informed Decision Making

  1. 1. Protecting Informed Decision Making In Cancer Care through Online Physician Engagement Matthew Katz, MD August 2019
  2. 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. 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. 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. 5. Tools to Create, Spread Ideas
  6. 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. 7. 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
  8. 8. 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
  9. 9. Overview  Doing nothing hurts patients and doctors  Organizing online may counteract misinformation  Opportunities for action and research
  10. 10. 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
  11. 11. 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
  12. 12. 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
  13. 13. 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
  14. 14. 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
  15. 15. 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
  16. 16. 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
  17. 17. 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
  18. 18. 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
  19. 19. 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
  20. 20. 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
  21. 21. 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
  22. 22. Academic Medicine Science Natural News Goop Dr. Oz Serendipitygreece.com
  23. 23. 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
  24. 24. Harnessing Free Time  People can use free time to collaborate online  Lower barriers for social action  Elements for Success  Means  Motive  Opportunity  Culture
  25. 25. Means: Sutton’s Law  Why go online to provide health information? Because that’s where people look for it
  26. 26. Means Digital Content Websites Public Patient Centric Doctor Centric Mobile Apps Texting EHR
  27. 27. Gallup, Dec 2018 N=1025
  28. 28. Twitter: Public, open access Digital Content Websites Public Patient Centric Doctor Centric Mobile Apps Texting EHR
  29. 29. 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
  30. 30. #bcsm = breast cancer social media
  31. 31. Symplur.com Katz et al, JAMA Oncol 2016
  32. 32. Structured Disease-Specific Hashtags Katz et al, JCO Clin Cancer Inform 2019
  33. 33. Attracting Health Professionals  Focus cognitive surplus online for  Education  Networking  Advocacy  Use hashtag #radonc starting 2014
  34. 34. #radonc Monthly Activity Prabhu et al, ASTRO 2019
  35. 35. #radonc Journal Club, 2015
  36. 36. #radonc Network Analysis 2014
  37. 37. #radonc Network Analysis 2017
  38. 38. #radonc Network Analysis 2019
  39. 39. Organizing the Internet Pereira et al, ASTRO 2019
  40. 40. Culture  Ability to communicate necessary but insufficient  Digital communications should  Reflect our commitment to patients  Favor collaboration, education over promotion  Components  Individual  Communities/Organizations
  41. 41. 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
  42. 42. 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
  43. 43. 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
  44. 44. Potential Privacy Breaches [Edited to exclude unpublished data under review]
  45. 45. Digital ‘Echo Chamber’
  46. 46. Inclusion = more people to help Source: USCJ.org
  47. 47. 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
  48. 48. 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
  49. 49. 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?
  50. 50. Why We Must Try “The secret of the care of the patient is in caring for the patient” – Francis Peabody
  51. 51. Summary  Patients deserve reliable, understandable health information  Doctors deserve training for the digital era  Inaction risks erosion of the therapeutic relationship
  52. 52. Thank you  Dr. Haas-Kogan, Dr. Martin, Dr. Nguyen  Social media collaborators Questions? Please contact me at @subatomicdoc

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