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Traditional vs Virtual - Options for Patient Support and Education

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Discussion of traditional and virtual models for breast cancer support, given at the American Society of Breast Surgeons Annual Meeting, April 2017

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Traditional vs Virtual - Options for Patient Support and Education

  1. 1. Traditional vs Virtual: Options for Patient Support & Education Deanna J. Attai MD FACS @DrAttai ASBrS Las Vegas 2017
  2. 2. No Financial Disclosures
  3. 3. NAPBC Standard 2.15 • Support and rehabilitation services are provided by or referred to clinicians with specialized knowledge of disease of the breast • “Supportive services include but are not limited to… support groups”
  4. 4. In Person Support Groups • Witness and model positive coping behaviors • Education about disease process, treatment effects • Instillation of hope, empowerment • Improved psychological well being Docherty A. Patient Educ Couns 2004;55(1):87-93
  5. 5. Limitations of In Person Support
  6. 6. Limitations of In Person Support
  7. 7. Fox S. 2014 Pew Research Center The Web at 25
  8. 8. Fox S. Pew Research Center Health Online 2013 • 72% of internet users searched for health information online • 26% read about other’s health experience • 16% connected w/others w/same condition • 5% participated in online support group • 50% of searches done on behalf of someone else The Social Life of Health Information
  9. 9. The Social Life of Health Information • Widespread availability of social tools • Patients actively seek out peers with similar conditions • FB 1B users worldwide – dominant home for disease-centric groups • Private and open groups • Peer to peer support, empowerment, advocacy and awareness Fox S. Pew Research Center The Social Life of Health Information 2011 Hong C et al. J Am Coll Radiol 2016;13:1615-1621
  10. 10. Clinic Based Patient Survey • 1282 patients, Comprehensive Cancer Center • 86% have internet access • Of those, 87% online weekly, 68% online daily • 21% had read about experiences from other cancer patients • 37% had written about their personal experiences • 12% participated in formal online group for cancer pts An L et al. JMIR Cancer 2016;2(2):310
  11. 11. Clinic Based Patient Survey Increased online social engagement associated with increased perception that internet is useful for social support An L et al. JMIR Cancer 2016;2(2):310
  12. 12. Benefits of Frequent Surfing • Opportunity to expand patient knowledge which increases patient activation • Activated patients better at self management – Impacts health outcomes – Decreases care costs – Increases QoL Grosberg D et al. J Med Internet Res 2016:18(8):e212
  13. 13. Compared with “never users”: Women who were frequently online more positively appraised their decision making • More likely to report a deliberative decision • More likely to report high decision satisfaction Wallner LP et al. JAMA Oncology 2016;2(12):1654-1656
  14. 14. Quality of Online Information • Evaluation of 45 unique websites • Most had unbiased, relevant information • Few prompts encouraging patients to examine options in context of their thoughts, feelings, fears, goals • Inadequate for informed decision making Bruce JG et al. J Surg Oncol 2015;112:575-580
  15. 15. Improvement in Education, Anxiety • 80% reported increased knowledge • 31% - 2nd opinion / bring new information to MD • 67% who reported high/extreme anxiety -> low/no (p<.001) • No respondents went from low / no anxiety to high or extreme Attai J Med Internet Res 2015;17(7):e188
  16. 16. Advantages of Online Support
  17. 17. Advantages of Online Support
  18. 18. Online Education Can’t Replace IRL • 1 in 5 no improvement in education • 9% persistent high anxiety • Role of SM is to complement not replace current practice Attai J Med Internet Res 2015;17(7):e188
  19. 19. MD Still Important For Education
  20. 20. Meet the Patients Online • MDs have opportunity to direct users to quality health info online – Create content – Participate in online groups • Increased MD engagement can substantially improve patient experience for those patients actively seeking information and advocating on behalf of other patients with similar diseases An L et al. JMIR Cancer 2016;2(2):310 Hong C et al. J Am Coll Radiol 2016;13:1615-1621
  21. 21. Information / Education
  22. 22. Disparities • Homogeneous, well educated, mostly white • Elderly, minorities, low socioeconomic status, internet illiterate • Internet availability and literacy as a component of health literacy
  23. 23. Levine DM et al. JAMA 2016;316(5):538-540
  24. 24. Levine DM et al. JAMA 2016;316(5):538-540
  25. 25. • Telephone survey 2013 ~1500 residents of Douglas County, NB • Health professionals important source of health info for <HS education and non-Hispanic Blacks • Younger, more educated, employed – more likely to use internet for health information • Lower likelihood of Hispanics to use internet compared to non-Hispanic whites • Need to understand needs of audience Kelley MS et al. Health Communication 2016,31(5):575-582 Some People Still Rely on Their Doctor!
  26. 26. • Health care models now emphasize self-care management • Increasing pressure for patients to obtain health information online • Digital health not reaching most seniors, associated with socioeconomic disparities • Raises concerns about ability to improve quality, cost and safety of healthcare • Need for enhanced patient communication skills, eHealth literacy assessment, guidance Levine DM et al. JAMA 2016;316(5):538-540 Silver MP J Med Internet Res 2015;17(1):e19 How Do We Make This Work?
  27. 27. Importance of Support
  28. 28. MD Involvement
  29. 29. Both is Better! • Group that received the most social support from peers used both online communities and face to face groups, 2 resources are complementary • Online support groups have been shown to fill gaps in supportive care by meeting needs of some BC survivors Bender JL et al. Patient Educ Couns 2013;93(3)472-479 Setoyama Y et al. Patient Educ Couns 2011;85(2):e95-e100

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