E-patient

An e-patient is a health consumer who participates fully in their own medical care, primarily by gathering information about medical conditions that impact them and their families, using the Internet and other digital tools.[1] The term encompasses those who seek guidance for their own ailments, and the friends and family members who research on their behalf. E-patients report two effects of their health research: "better health information and services, and different, but not always better, relationships with their doctors."[2]

E-patients are active in their care and demonstrate the power of the participatory medicine or Health 2.0 / Medicine 2.0.[3] model of care. The "e" can stand for "electronic" but has also been used to refer to other terms, such as "equipped", "enabled", "empowered" and "expert".[4][5]

The current state of knowledge on the impact of e-patients on the healthcare system and the quality of care received indicates:

  • A growing number of people say the internet played a crucial or important role as they helped another person cope with a major illness.[6][7]
  • Many clinicians underestimated the benefits and overestimated the risks of online health resources for patients.[8][9][10]
  • Medical online support groups are an important healthcare resource.[11]
  • "The net friendliness of clinicians and provider organizations—as rated by the e-patients they serve—is becoming an important new aspect of health care quality."[12]
  • According to one study, the advent of patients as partners is one of the most important cultural medical revolutions of the past century.[12]
  • In order to understand the impact of the e-patient, clinicians will likely need to move beyond "pre-internet medical constructs".[12]
  • Medical education must adapt to take the e-patient into account, and to prepare students for medical practice that includes the e-patient.[1]

A 2011 study of European e-patients found that they tended to be "inquisitive and autonomous" and that they noted that the number of e-patients in Europe appeared to be rising.[13] A 2012 study found that e-patients uploading videos about their health experienced a loss of privacy, but also positive benefits from social support.[14] A later 2017 study utilizing social network analysis found that when e-patients are included in health care conferences, they increase information flow, expand propagation, and deepen engagement in the conversation of tweets when compared to both physicians and researchers while only making up 1.4% of the stakeholder mix.[15]

Non-English translations and adaptations of "e-patient"

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Japan

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According to Maho Isono, PhD, at the International University of Health and Welfare in Ōtawara, Japan, the term closest to e-patient in Japanese is tojisha-kenkyu, where "kenkyu means study, investigation and research" and "tojisha refers to interested persons, disabled persons themselves or patients themselves."[16]

Sweden

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Inspired by the seminal work on e-patients by Tom Ferguson and the e-Patients Scholars Working Group,[17] Swedish patient and engineer Sara Riggare [sv] coined a new Swedish word, "spetspatient", meaning "lead user patient" or "lead patient", in February 2016.

See also

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References

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  1. ^ a b Masters, K.; Ng'Ambi, D.; Todd, G. (2010). "'I Found it on the Internet': Preparing for the e-patient in Oman". Sultan Qaboos University Medical Journal. 10 (2): 169–179. PMC 3074705. PMID 21509226.
  2. ^ "Fox, Susannah; Fallows, Deborah. 2003. Health searches and email have become more commonplace, but there is room for improvement in searches and overall Internet access" (PDF). Archived from the original (PDF) on 2023-03-25. Retrieved 2011-07-05.
  3. ^ Eysenbach G Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. J Med Internet Res 2008;10(3):e22
  4. ^ Kevin Kruse. "What do you mean, 'e-patient'?". Blog.kruresearch.com. Archived from the original on 2013-08-25. Retrieved 2013-09-13.
  5. ^ Hewitt-Taylor, Jaqui; Bond, Carol S (8 November 2012). "What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards" (PDF). Journal of Medical Internet Research. 14 (6): e155. doi:10.2196/jmir.2068. PMC 3510709. PMID 23137788.
  6. ^ Finding Answers Online in Sickness and in Health, 5/2/2006, Pew Internet Archived 2008-03-06 at the Wayback Machine.
  7. ^ Eysenbach G (2003). "The impact of the Internet on cancer outcomes". CA: A Cancer Journal for Clinicians. 53 (6): 356–71. CiteSeerX 10.1.1.526.4309. doi:10.3322/canjclin.53.6.356. PMID 15224975. S2CID 10192148.
  8. ^ Jacobson P (2007). "Empowering the physician-patient relationship: The effect of the Internet". Partnership: The Canadian Journal of Library and Information Practice and Research. 2 (1). doi:10.21083/partnership.v2i1.244. ISSN 1911-9593.
  9. ^ Ahmad F, Hudak PL, Bercovitz K, Hollenberg E, Levinson W (2006). "Are Physicians Ready for Patients With Internet-Based Health Information?". Journal of Medical Internet Research. 8 (3): e22. doi:10.2196/jmir.8.3.e22. PMC 2018833. PMID 17032638.
  10. ^ Crocco AG, Villasis-Keever M, Jadad AR (June 2002). "Analysis of cases of harm associated with use of health information on the internet". JAMA. 287 (21): 2869–71. doi:10.1001/jama.287.21.2869. PMID 12038937.
  11. ^ Feder, Judith; Sands, Daniel Z. (2008-02-25). "A Reader and Author Respond to 'ePatients: Engaging Patients in Their Own Care'". Medscape Journal of Medicine. 10 (2): 46. ISSN 1934-1997. PMC 2270894. PMID 18382715.
  12. ^ a b c Ferguson, Tom; Frydman, Gilles (2004-05-15). "The First Generation of E-Patients: These New Medical Colleagues Could Provide Sustainable Healthcare Solutions". British Medical Journal. 328 (7449): 1148–1149. doi:10.1136/bmj.328.7449.1148. ISSN 0959-8138. PMC 411079. PMID 15142894.
  13. ^ Santana, Silvina; Lausen, Berthold; Bujnowska-Fedak, Maria; Chronaki, Catherine E.; Prokosch, Hans-Ulrich; Wynn, Rolf (2011-04-16). "Informed citizen and empowered citizen in health: results from an European survey". BMC Family Practice. 12: 20. doi:10.1186/1471-2296-12-20. ISSN 1471-2296. PMC 3101118. PMID 21496309.
  14. ^ Gómez-Zúñiga, Beni; Fernandez-Luque, Luis; Pousada, Modesta; Hernández-Encuentra, Eulàlia; Armayones, Manuel (2012-04-25). "ePatients on YouTube: Analysis of Four Experiences From the Patients' Perspective". Medicine 2.0. 1 (1): e1. doi:10.2196/med2.2039. ISSN 1923-2195. PMC 4084771. PMID 25075229.
  15. ^ Utengen, Audun; Rouholiman, Dara; Gamble, Jamison G; III, Francisco Jose Grajales; Pradhan, Nisha; Staley, Alicia C; Bernstein, Liza; Young, Sean D; Clauson, Kevin A (2017). "Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Researchers". Journal of Medical Internet Research. 19 (8): e280. doi:10.2196/jmir.8049. PMC 5579322. PMID 28818821.
  16. ^ Salmi, Liz; Brudnicki, Selina; Isono, Maho; Riggare, Sara; Rodriquez, Cecilia; Schaper, Louise K.; Walker, Jan; Delbanco, Tom (2020-09-01). "Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA". BMJ Open. 10 (9): e037016. doi:10.1136/bmjopen-2020-037016. ISSN 2044-6055. PMC 7493106. PMID 32933961.
  17. ^ Ferguson, Tom. "e-patients: How they can help us heal health care" (PDF).
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