An e-patient is a health consumer who participates fully in his/her medical care, primarily by gathering information about medical conditions that impact them and their families, using the Internet and other digital tools. The term encompasses those who seek guidance for their own ailments and the friends and family members who go online 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."
E-patients are active in their care and demonstrate the power of the Participatory Medicine or Health 2.0 / Medicine 2.0. 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".
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.
- Many clinicians underestimated the benefits and overestimated the risks of online health resources for patients.
- Medical online support groups are an important healthcare resource.
- “…the net friendliness of clinicians and provider organizations—as rated by the e-patients they serve—is becoming an important new aspect of healthcare quality.”
- 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. A 2012 study found that e-patients uploading videos about their health experienced a loss of privacy, but also positive benefits from social support. Furthermore, a 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.
Inspired by the seminal work on e-patients by Tom Ferguson and the e-Patients Scholars Working Group, Swedish patient and engineer Sara Riggare, in February 2016 coined a new Swedish word: "spetspatient" (in English: "lead user patient" or "lead patient")
- Doctor–patient relationship
- Patient opinion leader
- Treatment decision support
- Virtual patient
- 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.
- 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.
- Eysenbach G Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness. J Med Internet Res 2008;10(3):e22
- Kevin Kruse. "What do you mean, "e-patient"?". Blog.kruresearch.com. Archived from the original on 2013-08-25. Retrieved 2013-09-13.
- 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.
- Finding Answers Online in Sickness and in Health, 5/2/2006, Pew Internet Archived 2008-03-06 at the Wayback Machine.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Ferguson, Tom. "e-patients: How they can help us heal health care" (PDF).
- van Woerkum CM (1 April 2003). "The Internet and primary care physicians: coping with different expectations". The American Journal of Clinical Nutrition. 77 (4 Suppl): 1016S–1018S. doi:10.1093/ajcn/77.4.1016S. PMID 12663310.
- Susannah Fox; Pew Internet; American Life Project (2004-09-27). "Today's E-Patients: Hunters and Gatherers of Health Information Online". Archived from the original on 2007-05-13. Retrieved 2007-04-23.
- Ferguson, Tom (2007). e-Patients: How They Can Help Us Heal Health Care (PDF). Archived from the original (PDF) on 2008-07-23. Retrieved 2013-10-07.
- Rimer BK, Lyons EJ, Ribisl KM, et al. (July 2005). "How New Subscribers Use Cancer-Related Online Mailing Lists". Journal of Medical Internet Research. 7 (3): e32. doi:10.2196/jmir.7.3.e32. PMC 1550655. PMID 15998623.
- Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK (2007). "How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists". Journal of Medical Internet Research. 9 (2): e12. doi:10.2196/jmir.9.2.e12. PMC 1874721. PMID 17513283.
- The rise of the e-patient, Lee Rainie from the Pew Internet and American Life Project presentation at the Medical Library Association, Oct 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.
- Time Magazine article: "When the patient is a Googler"
- Who Cares Booklet by the Federal Trade Commission, a guide to health information
- Dave deBronkart: Meet e-Patient Dave, video at TED
- Greenwald, Ted. "A Social Network for Crohn's Disease | MIT Technology Review". Technologyreview.com. Retrieved 2013-09-13.
- Bhargava, Rohit; Johnmar, Fard (2013). ePatient 2015: 15 Surprising Trends Changing Healthcare.