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Patients on the Internet: The Information Age and Trust in Medicine, Conspiracies, and Proliferation of False Information

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The Complex Role of Patient Trust in Oncology

Part of the book series: Psychiatry Update ((PU,volume 5))

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Abstract

The Internet is a useful tool to search for information about world history, art and literature, and scientific discoveries. Cancer patients and medical professionals have increasing access to the latest scientific research. However, the Internet also provides access to less rigorous science and opinion, which may be based on anecdotal information, philosophical, religious, or political beliefs, fake news, or conspiracy theories, and unaccompanied by disclaimer warnings. The origin of information may or may not matter to Internet users, and they may have a predilection for different sources depending on their political views. This is clearly illustrated by the panoply of misinformation propagated on the Internet about the Covid-19 pandemic. Even with the best intended, scientifically sound websites available to the public, unless specifically stated, one does not always have the same fiduciary connection as with a traditional physician/provider-patient relationship. Yet, people expect to find information for ailments or treatments that resemble their actual symptoms or diagnoses from reliable sources. How do patients decide which sources of information to trust, and how do they integrate that information into their conversations with their medical providers? And if a site can be trusted, can the information be taken as truth for the information seeker? Unfortunately, there are no straightforward answers to these questions. We will address different aspects of the Internet in health care and oncology, including gathering information, the extent of misinformation, cultural aspects of information seeking, correcting misinformation, the use of social media for information and support, as well as suggestions for strengthening the trust capability of a patient-provider-Internet intermediary relationship and potentially reducing health care disparities.

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References

  1. Merriam Webster. 2021. https://www.merriam-webster.com/dictionary/trust.

  2. University of Missouri School of Medicine Clinical Ethics Committee. https://medicine.missouri.edu/centers-institutes-labs/health-ethics/faq/provider-patient-relationship. Accessed 27 Dec 2021.

  3. NLM Technical Bulletin. 1997. https://www.nlm.nih.gov/pubs/techbull/mj97/mj97_web.html.

  4. Kronenfeld M, Kronenfeld JJ. Al Gore, the Internet, and the National Library of Medicine. Circulating Now (NLM); 2020. https://circulatingnow.nlm.nih.gov/2020/07/02/al-gore-the-internet-and-the-national-library-of-medicine/.

    Google Scholar 

  5. Varmus H. Progress toward public access to science. PLoS Biol. 2008;6(4):e101.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Brown PO, Eisen MB, Varmus HE. Why PLoS became a publisher. PLoS Biol. 2003;1(1):E36.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Piwowar H, Priem J, Larivière V, Alperin JP, Matthias L, Norlander B, Farley A, West J, Haustein S. The state of OA: a large-scale analysis of the prevalence and impact of Open Access articles. PeerJ. 2018;13(6):e4375.

    Article  Google Scholar 

  8. Zerhouni EA. Information access. NIH public access policy. Science. 2004;306(5703):1895.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  9. Briand SC, Cinelli M, Nguyen T, Lewis R, Prybylski D, Valensise CM, Colizza V, Tozzi AE, Perra N, Baronchelli A, Tizzoni M, Zollo F, Scala A, Purnat T, Czerniak C, Kucharski AJ, Tshangela A, Zhou L, Quattrociocchi W. Infodemics: a new challenge for public health. Cell. 2021;184(25):6010–4.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Eysenbach G. How to fight an infodemic: the four pillars of infodemic management. J Med Internet Res. 2020;22(6):e21820.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Pew Research Center. Internet/Broadband Fact Sheet. 2021 April. https://www.pewresearch.org/internet/fact-sheet/internet-broadband/.

  12. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewor--let the reader and viewer beware. JAMA. 1997;277(15):1244–5.

    Article  CAS  PubMed  Google Scholar 

  13. Ahmed T. MedlinePlus at 21: a website devoted to consumer health information. Stud Health Technol Inform. 2020;25(269):303–12.

    Google Scholar 

  14. Miller N, Lacroix EM, Backus JE. MEDLINEplus: building and maintaining the National Library of Medicine’s consumer health Web service. Bull Med Libr Assoc. 2000;88(1):11–7.

    CAS  PubMed  PubMed Central  Google Scholar 

  15. Griffiths KM, Christensen H. Website quality indicators for consumers. J Med Internet Res. 2005;7(5):e55.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Nghiem AZ, Mahmoud Y, Som R. Evaluating the quality of internet information for breast cancer. Breast. 2016;25:34–7.

    Article  CAS  PubMed  Google Scholar 

  17. Banerjee D, Meena KS. COVID-19 as an “infodemic” in public health: critical role of the social media. Front Public Health. 2021;18(9):610623.

    Article  Google Scholar 

  18. Blankenship SB, Nakano-Okuno M, Zhong R. Physicians’ role in the COVID-19 infodemic: a reflection. South Med J. 2021;114(12):812–4.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  19. Wang Y, McKee M, Torbica A, Stuckler D. Systematic literature review on the spread of health-related misinformation on social media. Soc Sci Med. 2019;240:112552.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Abbasi J. COVID-19 conspiracies and beyond: how physicians can deal with patients’ misinformation. JAMA. 2021;325(3):208–10.

    Article  CAS  PubMed  Google Scholar 

  21. Scherer LD, McPhetres J, Pennycook G, Kempe A, Allen LA, Knoepke CE, Tate CE, Matlock DD. Who is susceptible to online health misinformation? A test of four psychosocial hypotheses. Health Psychol. 2021;40(4):274–84.

    Article  PubMed  Google Scholar 

  22. Trivedi N, Krakow M, Hyatt Hawkins K, Peterson EB, Chou WY. “Well, the message is from the institute of something”: exploring source trust of cancer-related messages on simulated Facebook posts. Frontiers in Communication. 2020;28(5):12.

    Article  Google Scholar 

  23. Chou WS, Gaysynsky A, Vanderpool RC. The COVID-19 misinfodemic: moving beyond fact-checking. Health Educ Behav. 2021;48(1):9–13.

    Article  PubMed  Google Scholar 

  24. Espina CR, Spracklin E. Social media literacy in an infodemic. Nurse Educ. 2021;46(6):332.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Hernandez L, French M, Parker R. Roundtable on health literacy: issues and impact. Stud Health Technol Inform. 2017;240:169–85.

    PubMed  Google Scholar 

  26. Norman CD, Skinner HA. eHealth literacy: essential skills for consumer health in a networked world. J Med Internet Res. 2006;8(2):e9.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Chen X, Hay JL, Waters EA, Kiviniemi MT, Biddle C, Schofield E, Li Y, Kaphingst K, Orom H. Health literacy and use and trust in health information. J Health Commun. 2018;23(8):724–34.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Clarke N, Dunne S, Coffey L, Sharp L, Desmond D, O’Conner J, O'Sullivan E, Timon C, Cullen C, Gallagher P. Health literacy impacts self-management, quality of life and fear of recurrence in head and neck cancer survivors. J Cancer Surviv. 2021;15(6):855–65.

    Article  PubMed  Google Scholar 

  29. Luo A, Qin L, Yuan Y, Yang Z, Liu F, Huang P, Xie W. The effect of online health information seeking on physician-patient relationships: systematic review. J Med Internet Res. 2022;24(2):e23354.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Housten AJ, Gunn CM, Paasche-Orlow MK, Basen-Engquist KM. Health literacy interventions in cancer: a systematic review. J Cancer Educ. 2021;36(2):240–52.

    Article  CAS  PubMed  Google Scholar 

  31. Verma R, Saldanha C, Ellis U, Sattar S, Haase KR. eHealth literacy among older adults living with cancer and their caregivers: a scoping review. J Geriatr Oncol. 2021;13:S1879-4068(21)00254-X.

    PubMed  Google Scholar 

  32. Holden CE, Wheelwright S, Harle A, Wagland R. The role of health literacy in cancer care: A mixed studies systematic review. PLoS One. 2021;16(11):e0259815.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  33. Anampa-Guzmán A, Freeman-Daily J, Fisch M, Lou E, Pennell NA, Painter CA, Sparacio D, Lewis MA, Karmo M, Anderson PF, Graff SL, Collaboration for Outcomes using Social Media in Oncology. The rise of the expert patient in cancer: from backseat passenger to co-navigator. JCO Oncol Pract. 2022;28:OP2100763.

    Google Scholar 

  34. Baron RJ, Berinsky AJ. Mistrust in science – a threat to the patient-physician relationship. N Engl J Med. 2019;381(2):182–5.

    Article  PubMed  Google Scholar 

  35. Breakwell GM. Mistrust, uncertainty and health risks. Contemp Soc Sci. 2020;15(5):504–16.

    Article  Google Scholar 

  36. Park S, Fisher C, Flew T, Dulleck U. Global mistrust in news: the impact of social media on trust. Int J Media Manag. 2020;22(2):83–96.

    Article  Google Scholar 

  37. Seetharamu N, Iqbal U, Weiner JS. Determinants of trust in the patient-oncologist relationship. Palliat Support Care. 2007;5(4):405–9.

    Article  PubMed  Google Scholar 

  38. Hillen MA, de Haes HC, Smets EM. Cancer patients’ trust in their physician-a review. Psychooncology. 2011;20(3):227–41.

    Article  PubMed  Google Scholar 

  39. Domínguez M, Sapiña L. From sweeteners to cell phones-cancer myths and beliefs among journalism undergraduates. Eur J Cancer Care. 2020;29(1):e13180.

    Article  Google Scholar 

  40. Braun LA, Zomorodbakhsch B, Keinki C, Huebner J. Information needs, communication and usage of social media by cancer patients and their relatives. J Cancer Res Clin Oncol. 2019;145(7):1865–75.

    Article  PubMed  Google Scholar 

  41. Caruso Brown AE. Social media in the pediatric hematology/oncology clinical space. J Pediatr Hematol Oncol. 2021;43(1):e37–44.

    Article  PubMed  Google Scholar 

  42. Huerta TR, Walker DM, Ford EW. Cancer Center Website Rankings in the USA: expanding benchmarks and standards for effective public outreach and education. J Cancer Educ. 2017;32(2):364–73.

    Article  PubMed  Google Scholar 

  43. Eng L, Bender J, Hueniken K, Kassirian S, Mitchell L, Aggarwal R, et al. Age differences in patterns and confidence of using internet and social media for cancer-care among cancer survivors. J Geriatr Oncol. 2020;11(6):1011–9.

    Article  PubMed  Google Scholar 

  44. Huerta TR, Walker DM, Johnson T, Ford EW. A time series analysis of cancer-related information seeking: hints from the health information National Trends Survey (HINTS) 2003–2014. J Health Commun. 2016;21(9):1031–8.

    Article  PubMed  Google Scholar 

  45. Rivera YM, Moran MB, Thrul J, Joshu C, Smith KC. When engagement leads to action: understanding the impact of cancer (mis)information among Latino/a Facebook users. Health Commun. 2021;13:1–13.

    Google Scholar 

  46. Welch Cline RJ, Penner LA, Harper FW, Foster TS, Ruckdeschel JC, Albrecht TL. The roles of patients’ internet use for cancer information and socioeconomic status in oncologist-patient communication. J Oncol Pract. 2007;3(3):167–71.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Rice LJ, Halbert CH. Social networks across common cancer types: the evidence, gaps, and areas of potential impact. Adv Cancer Res. 2017;133:95–128.

    Article  CAS  PubMed  Google Scholar 

  48. Tarver WL, Menachemi N. The impact of health information technology on cancer care across the continuum: a systematic review and meta-analysis. J Am Med Informatics Assoc. 2016;23(2):420–7.

    Article  Google Scholar 

  49. Han CJ, Lee YJ, Demiris G. Interventions using social media for cancer prevention and management. Cancer Nurs. 2018;41(6):E19–31.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Delgado-López PD, Corrales-García EM. Influence of internet and social media in the promotion of alternative oncology, cancer quackery, and the predatory publishing phenomenon. Cureus. 2018;10(5):e2617.

    PubMed  PubMed Central  Google Scholar 

  51. Pan S, Zhang D, Zhang J. Caught in the crossfire: how contradictory information and norms on social media influence young women’s intentions to receive HPV Vaccination in the United States and China. Front Psychol. 2020;3(11):548365.

    Article  Google Scholar 

  52. Sommariva S, Vamos C, Mantzarlis A, Đào LUL, Martinez TD. Spreading the (fake) news: exploring health messages on social media and the implications for health professionals using a case study. Am J Health Educ. 2018;49(4):246–55.

    Article  Google Scholar 

  53. Kim HK, Ahn J, Atkinson L, Kahlor LA. Effects of COVID-19 misinformation on information seeking, avoidance, and processing: a multicountry comparative study. Sci Commun. 2020;42(5):586–615.

    Article  PubMed Central  Google Scholar 

  54. Salgia S, Salgia N, Prajapati S, Seghal I, Bautista F, Ruel N, et al. Twitter as a tool to spread communication regarding genitourinary cancers during the COVID-19 pandemic. Kidney Cancer. 2021;5(2):73–8.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  55. Chen L, Wang X, Peng TQ. Nature and diffusion of gynecologic cancer-related misinformation on social media: analysis of tweets. J Med Internet Res. 2018;20(10):e11515.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Loeb S, Sengupta S, Butaney M, Macaluso JN Jr, Czarniecki SW, Robbins R, et al. Dissemination of misinformative and biased information about prostate cancer on YouTube. Eur Urol. 2019;75(4):564–7.

    Article  PubMed  Google Scholar 

  57. Gorman SE, Gorman JM. Denying to the grave: why we ignore the science that will save us. Revised and updated edition. New York: Oxford University Press; 2021.

    Google Scholar 

  58. Greifeneder R, Jaffé ME, Newman EJ, Schwarz N. The psychology of fake news: accepting, sharing, and correcting misinformation. New York: Routledge; 2021.

    Google Scholar 

  59. Hmielowski JD, Kirkpatrick AW, Boyd AD. Understanding public support for smart meters: media attention, misperceptions, and knowledge. J Risk Res. 2021;24(11):1388–404.

    Article  Google Scholar 

  60. van der Meer TGLA, Jin Y. Seeking formula for misinformation treatment in public health crises: the effects of corrective information type and source. Health Commun. 2020;35(5):560–75.

    Article  PubMed  Google Scholar 

  61. Jaiswal J, LoSchiavo C, Perlman DC. Disinformation, misinformation and inequality-driven mistrust in the time of COVID-19: lessons unlearned from AIDS denialism. AIDS Behav. 2020;24(10):2776–80.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  62. Bode L, Vraga EK. See something, say something: correction of global health misinformation on social media. Health Commun. 2018;33(9):1131–40.

    Article  PubMed  Google Scholar 

  63. Huang Y, Wang W. When a story contradicts: correcting health misinformation on social media through different message formats and mechanisms. Inf Commun Soc. 2020;2:1–8.

    Google Scholar 

  64. Khan ML, Idris IK. Recognise misinformation and verify before sharing: a reasoned action and information literacy perspective. Behav Inf Technol. 2019;38(12):1194–212.

    Article  Google Scholar 

  65. MacFarlane D, Hurlstone MJ, Ecker UKH. Protecting consumers from fraudulent health claims: a taxonomy of psychological drivers, interventions, barriers, and treatments. Soc Sci Med. 2020;259:112790.

    Article  PubMed  Google Scholar 

  66. Qinyu E, Sakura O, Li G. Mapping the field of misinformation correction and its effects: A review of four decades of research. Soc Sci Inf. 2021;60(4):522–47.

    Article  Google Scholar 

  67. Rodgers S, Stemmle J. Are “well-told” stories of cancer worn out? insights on persuasion characteristics used in cancer narrative PSAs. J Curr Issues Res Advert. 2020;41(3):257–83.

    Article  Google Scholar 

  68. Chou WS, Oh A, Klein WMP. Addressing health-related misinformation on social media. JAMA. 2018;320(23):2417–8.

    Article  PubMed  Google Scholar 

  69. Charbonneau DH. Privacy practices of health social networking sites: implications for privacy and data security in online cancer communities. CIN Comput Informatics Nurs. 2016;34(8):355–9.

    Article  Google Scholar 

  70. Sedrak MS, Cohen RB, Merchant RM, Schapira MM. Cancer communication in the social media age. JAMA Oncol. 2016;2(6):822–3.

    Article  PubMed  Google Scholar 

  71. Harkin LJ, Beaver K, Dey P, Choong KA. Secret groups and open forums: defining online support communities from the perspective of people affected by cancer. Digit Health. 2020;16(6):2055207619898993.

    Google Scholar 

  72. Corter AL, Speller B, Sequeira S, Campbell C, Facey M, Baxter NN. What young women with breast cancer get versus what they want in online information and social media supports. J Adolesc Young Adult Oncol. 2019;8(3):320–8.

    Article  PubMed  Google Scholar 

  73. Tolby LT, Hofmeister EN, Fisher S, Chao S, Benedict C, Kurian AW, et al. Patterns of social media use and associations with psychosocial outcomes among breast and gynecologic cancer survivors. J Cancer Survivorship. 2021;15(5):677–84.

    Article  Google Scholar 

  74. Gustafson DH, Hawkins R, McTavish F, Pingree S, Chen WC, Volrathongchai K, Stengle W, Stewart JA, Serlin RC. Internet-based interactive support for cancer patients: are integrated systems better? J Commun. 2008;58(2):238–57.

    Article  PubMed  PubMed Central  Google Scholar 

  75. Milley KM, Chima SA, Cummings KL, Emery JD. Look who’s talking now: cancer in primary care on Twitter. An observational study. BJGP Open. 2021;5(1):1–10.

    Article  Google Scholar 

  76. Sedrak MS, Dizon DS, Anderson PF, Fisch MJ, Graham DL, Katz MS, et al. The emerging role of professional social media use in oncology. Future Oncol. 2017;13(15):1281–5.

    Article  CAS  PubMed  Google Scholar 

  77. Sedrak MS, Salgia MM, Decat Bergerot C, Ashing-Giwa K, Cotta BN, Adashek JJ, Dizman N, Wong AR, Pal SK, Bergerot PG. Examining public communication about kidney cancer on twitter. JCO Clin Cancer Inform. 2019;3:1–6.

    Article  PubMed  Google Scholar 

  78. Smaldone F, Ippolito A, Ruberto M. The shadows know me: exploring the dark side of social media in the healthcare field. Eur Manage J. 2020;38(1):19–32.

    Article  Google Scholar 

  79. Dizon DS, Graham D, Thompson MA, Johnson LJ, Johnston C, Fisch MJ, Miller R. Practical guidance: the use of social media in oncology practice. J Oncol Pract. 2012;8(5):e114–24.

    Article  PubMed  PubMed Central  Google Scholar 

  80. Roth AJ, Kornblith AB, Batel-Copel L, Peabody E, Scher HI, Holland JC. Rapid screening for psychologic distress in men with prostate carcinoma: a pilot study. Cancer. 1998;82(10):1904–8.

    Article  CAS  PubMed  Google Scholar 

  81. Portillo IA, Johnson CV, Johnson SY. Quality evaluation of consumer health information websites found on Google using DISCERN, CRAAP, and HONcode. Med Ref Serv Q. 2021;40(4):396–407.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York City, NY, USA

    Andrew J. Roth

  2. Professor Emeritus of Clinical Psychiatry, Weill Cornell Medical College, New York City, NY, USA

    Andrew J. Roth & Jacob A. Lowy

  3. Memorial Sloan Kettering Cancer Center Medical Library, New York City, NY, USA

    Konstantina Matsoukas

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Correspondence to Andrew J. Roth .

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Editors and Affiliations

  1. Psychiatry Dept., Wilmot Cancer Center, University of Rochester, Rochester, NY, USA

    Daniel C. McFarland

  2. Neuroscience and Rehabilitation, Institute Psychiatry, University of Ferrara, Ferrara, Italy

    Luigi Grassi

  3. Assistant Dean, Emeritus, for Research, University of Michigan–Ann Arbor, Ann Arbor, MI, USA

    Samuel M. Silver

  4. Department of Psychiatry, University of Michigan, Ann Arbor, MI, USA

    Michelle B. Riba

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Roth, A.J., Lowy, J.A., Matsoukas, K. (2024). Patients on the Internet: The Information Age and Trust in Medicine, Conspiracies, and Proliferation of False Information. In: McFarland, D.C., Grassi, L., Silver, S.M., Riba, M.B. (eds) The Complex Role of Patient Trust in Oncology. Psychiatry Update, vol 5. Springer, Cham. https://doi.org/10.1007/978-3-031-48557-2_6

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