E-patient explained

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.
• In order to understand the impact of the e-patient, clinicians will likely need to move beyond "pre-internet medical constructs".
• Medical education must adapt to take the e-patient into account, and to prepare students for medical practice that includes the e-patient.

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"

Japan

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

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

See also

• Doctor–patient relationship
• eHealth
• mHealth
• Patient opinion leader
• Treatment decision support
• Virtual patient

External links

• van Woerkum CM . The Internet and primary care physicians: coping with different expectations . The American Journal of Clinical Nutrition. 77 . 4 Suppl . 1016S–1018S . 1 April 2003. 12663310 . 10.1093/ajcn/77.4.1016S . free .
• Web site: Today's E-Patients: Hunters and Gatherers of Health Information Online . Susannah Fox . Pew Internet . American Life Project . 2004-09-27 . 2007-04-23 . https://web.archive.org/web/20070513203615/http://www.pewinternet.org/PPF/r/27/presentation_display.asp . 2007-05-13 . dead.
• Book: Ferguson, Tom. e-Patients: How They Can Help Us Heal Health Care. 2007. 2013-10-07. https://web.archive.org/web/20080723113355/http://e-patients.net/e-Patients_White_Paper.pdf. 2008-07-23. dead.
• Rimer BK, Lyons EJ, Ribisl KM, etal . How New Subscribers Use Cancer-Related Online Mailing Lists . Journal of Medical Internet Research . 7 . 3 . e32 . July 2005 . 15998623 . 1550655 . 10.2196/jmir.7.3.e32 . free .
• Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK . How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists . Journal of Medical Internet Research . 9 . 2 . e12 . 2007 . 17513283 . 1874721 . 10.2196/jmir.9.2.e12 . free .
• The rise of the e-patient, Lee Rainie from the Pew Internet and American Life Project presentation at the Medical Library Association, October 7, 2009
• E-patients With a Disability or Chronic Disease, from the Pew Internet and American Life Project
• Association of Cancer Online Resources (ACOR), an aggregate of e-patient online communities for knowledge-sharing about cancer.
• Haig, Scott (November 8, 2007). "When the patient is a Googler". Time.
• Who Cares Booklet by the Federal Trade Commission, a guide to health information
• Dave deBronkart: Meet e-Patient Dave, video at TED
• Web site: Greenwald . Ted . A Social Network for Crohn's Disease | MIT Technology Review . Technologyreview.com . 2013-09-13.
• Book: Bhargava, Rohit. ePatient 2015: 15 Surprising Trends Changing Healthcare. 2013. Johnmar, Fard.

Notes and References

1. 3074705. 2010. Masters. K.. 'I Found it on the Internet': Preparing for the e-patient in Oman. Sultan Qaboos University Medical Journal. 10. 2. 169–179. Ng'Ambi. D.. Todd. G.. 21509226.
2. Web site: 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. . 2011-07-05 . 2023-03-25 . https://web.archive.org/web/20230325085322/http://pewinternet.org/~/media//Files/Reports/2003/PIP_Health_Report_July_2003.pdf.pdf . dead .
3. Eysenbach G Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. J Med Internet Res 2008;10(3):e22
4. Web site: Kevin Kruse . What do you mean, 'e-patient'? . Blog.kruresearch.com . 2013-09-13 . https://archive.today/20130825165112/http://blog.kruresearch.com/2009/05/what-do-you-mean-e-patient/ . 2013-08-25 . dead .
5. Bond. Carol S. 8 November 2012. What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards. Journal of Medical Internet Research. 14. 6. e155. 10.2196/jmir.2068. 23137788. 3510709. Hewitt-Taylor. Jaqui. free .
6. http://www.pewinternet.org/pdfs/PIP_Health_Decisions_2006.pdf Finding Answers Online in Sickness and in Health, 5/2/2006, Pew Internet
7. Eysenbach G . The impact of the Internet on cancer outcomes . CA: A Cancer Journal for Clinicians. 53 . 6 . 356–71 . 2003 . 15224975 . 10.3322/canjclin.53.6.356 . 10.1.1.526.4309 . 10192148 .
8. Jacobson P . Empowering the physician-patient relationship: The effect of the Internet . Partnership: The Canadian Journal of Library and Information Practice and Research . 2 . 1 . 2007 . 1911-9593 . 10.21083/partnership.v2i1.244. free .
9. Ahmad F, Hudak PL, Bercovitz K, Hollenberg E, Levinson W . Are Physicians Ready for Patients With Internet-Based Health Information? . Journal of Medical Internet Research . 8 . 3 . e22 . 2006 . 17032638 . 2018833 . 10.2196/jmir.8.3.e22 . free .
10. Crocco AG, Villasis-Keever M, Jadad AR . Analysis of cases of harm associated with use of health information on the internet . JAMA . 287 . 21 . 2869–71 . June 2002 . 12038937 . 10.1001/jama.287.21.2869. free .
11. 1934-1997 . 10 . 2 . 46 . Feder . Judith . Sands . Daniel Z. . A Reader and Author Respond to 'ePatients: Engaging Patients in Their Own Care' . Medscape Journal of Medicine . 2008-02-25 . 18382715 . 2270894 .
12. 10.1136/bmj.328.7449.1148 . 0959-8138 . 328 . 7449 . 1148–1149 . Ferguson . Tom . Frydman . Gilles . The First Generation of E-Patients: These New Medical Colleagues Could Provide Sustainable Healthcare Solutions . British Medical Journal . 2004-05-15 . 15142894 . 411079 .
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. 10.1186/1471-2296-12-20. 1471-2296. 3101118. 21496309 . free .
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. 10.2196/med2.2039. 1923-2195. 4084771. 25075229 . free .
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. en. 19. 8. e280. 10.2196/jmir.8049. 28818821. 5579322 . free .
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 . en . 10 . 9 . e037016 . 10.1136/bmjopen-2020-037016 . 2044-6055 . 32933961. free . 7493106 .
17. Web site: e-patients: How they can help us heal health care. Ferguson. Tom.