Health information on the Internet

a 1984 United States advertisement for access to health information through the 1980s Apple III

Health information on the Internet refers to all communication related to health done on the Internet.

Types of health information on the Internet

As a general communication channel, various Internet products serve every type of general health information.

Targeting types of information to different audiences

In the late 1990s researchers began to note that huge numbers of people were using the Internet to seek health information, despite various problems with the quality of information or inefficiencies in accessing it.[1] Various problems have been identified for those using search engines to seek health information.[2]

There is a premise that patients with access to their personal health information presented in a form they can understand will be able to interpret and learn from this information in a way that benefits them.[3] Physicians worry that patients using their own medical history records as a starting point for personal research on the Internet are at risk for being overwhelmed and misinformed when seeking health information on the Internet.[4]

As of 2013 opinions about the relationship health care providers should have with online health information were still being established.[5] According to one 2014 study, "The flow of information has fundamentally changed, and physicians have less control over health information relayed to patients. Not surprisingly, this paradigm shift has elicited varied and sometimes conflicting views about the value of the Internet as a tool to improve health care."[6]

Social media channels have been noted as places which physicians can visit to get insight on patient thoughts.[7] Patients have increasingly turned to social media for health information, sometimes of dubious quality.[8] [9][10][11] Several studies have used social media to gather data on patients' adverse drug reactions (ADRs), with generally promising results.[12]

Various commercial organizations use health information gathered from the Internet. The use of health information gathered from social media has been described as raising serious ethical and privacy concerns,[13][14] including the risk of accidental violations of patient privacy by health care providers on social media.[15][16]

Educational resources for lay audiences

Background on the doctor–patient relationship

Physicians have difficulty explaining complicated medical concepts to their patients and patients have difficulty understanding complicated things which physicians tell them. One reasons for this is that a patient's visit to a physician is likely to be less than 15 minutes, and in any case, physicians are unable to spend the amount of time which patients that patients typically desire.[17] Physicians use medical terms which patients do not understand, but which they would like to learn.[18] There is consensus that patients should have shared decision making, which means that they make informed decisions about the direction of their health care in collaboration with their physician.[19] Rich, educated, socially advantaged patients enjoy many more benefits of shared decision making than patients who have disadvantages in getting healthcare, including lower socioeconomic class or having a minority status.[20]

Lack of patient understanding of health contributes to a range of problems including tendency to not adhere to the physician's medical advice and missing medical appointments.[21] Patients without access to health information are also more likely to use complementary and alternative medicine which is not evidence-based medicine and to fail to inform their physician that they are doing so.[21][22] While some benefits can be gained by training physicians to be more efficient in serving patients, there are also benefits in training patients to be more efficient in getting benefits from physicians and there are arguments that encouraging efficient patient behavior is a powerful strategy for improving health care processes.[23]

Resources

Various social forums exist in which anyone can have conversations about health with their peers. Such forums are especially popular among patients who seek to have conversations with other patients with a shared medical concern.[24] Those who participate in online communities which discuss health issues report feeling relief about their health worries, perceiving more control over their health and medical condition, having more medical knowledge, and having more personal agency overall.[25]

Some research has failed to find evidence to validate physicians' concerns that patients typically receive misinformation online or using health information to inappropriately conduct self diagnosis.[24][26][27] Patients with chronic diseases who use the Internet to get health information often acquire good skills to judge the quality of information which they find.[28]

Academic medical literature

The written record of medical consensus is stored in scientific journals. Since the advent of electronic publishing there has been academic journal publishing reform which had a range of effects, including more researchers and physicians having greater access to professional information in medical journals through the Internet.

Patients' personal health information

Through various sources both publicly and privately available, datasets containing health information about large numbers of patients are available on the Internet to an extent which was impossible to manage before the Internet.

Quality

Measures and standards for ensuring quality control on the Internet have been criticized and no one standard is universally accepted.[29] Regardless of what kind of measure is used, much health information on the Internet is of dubious quality.[30] Among all sources there is a wide variance in quality of health information on the Internet.[31]

Personal health information

For many applications people wish to use health information on the Internet to give insight about a personal health concern. Because of this, the goal is often to use the Internet to find information described in a person's medical record. Since the advent of electronic media, medical records have been increasingly kept as electronic medical records. If electronic medical records were shared online then it would be easy to match those with information and conduct a range of research.[32] However, all medical records are protected health information because sharing personal health information exposes an individual to a range of harms which result from violation of their expectation of privacy.

There is currently broad international debate about how to balance patient and commercial medicine demands for personal health information with individual's needs for safety and respect.

Electronic medical records

An electronic medical record is a medical record stored as electronic media.[33]

De-identification

Main article: De-identification

De-identification is an attempt to divide a collection of information about a particular person so that all information which identifies the person is removed, and with intent to distribute whatever information is left. The closer the data is to anonymization the less valuable the data is to those who want it, so in general, data is only de-identified somewhat and rarely anonymized. There are many controversies in de-identification.

Research using personal health information

There is a large demand for access to large collections of various types of personal health information. Almost all of this demand is commercial.

Distribution of collections of personal health information

Various groups have expressed worry over danger to the public which results from the distribution of collections of personal health information.[34]

In 2014 National Health Service in the United Kingdom proposed to sell datasets of personal health information.[35][36]

Major providers of health information on the Internet

PubMed

Main article: PubMed

PubMed is a free search engine accessing primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine at the National Institutes of Health maintains the database.

Wikipedia

In 2014 Wikipedia was described as "the leading single source of healthcare information for patients and healthcare professionals".[37]

MedPage Today

Provides detailed professional medical news to doctors, helping doctors to use the latest innovations in medical science

Other wikis

Main article: List of medical wikis

Regulation

In the United States the Food and Drug Administration offers guidance for health industry organizations which share information online.[38][39]

References

  1. ↑ Risk, A.; Petersen, C. (2002). "Health Information on the Internet". JAMA. 287 (20): 2713–2715. doi:10.1001/jama.287.20.2713. PMID 12020308.
  2. ↑ Berland, G. K.; Elliott, M. N.; Morales, L. S.; Algazy, J. I.; Kravitz, R. L.; Broder, M. S.; Kanouse, D. E.; Muñoz, J. A.; Puyol, J. A.; Lara, M.; Watkins, K. E.; Yang, H.; McGlynn, E. A. (2001). "Health Information on the Internet". JAMA. 285 (20): 2612–2621. doi:10.1001/jama.285.20.2612. PMID 11368735.
  3. ↑ Beaudin, JS; Intille, SS; Morris, ME (2006). "To track or not to track: user reactions to concepts in longitudinal health monitoring.". Journal of medical Internet research. 8 (4): e29. doi:10.2196/jmir.8.4.e29. PMC 1794006Freely accessible. PMID 17236264.
  4. ↑ Robeznieks, A (May 21, 2007). "Getting personal. Legal liability, patient-data overload among issues making physicians uneasy over emergence of personal health records.". Modern healthcare. 37 (21): 40–2. PMID 17824189.
  5. ↑ Farnan, Jeanne M. (16 April 2013). "Online Medical Professionalism: Patient and Public Relationships: Policy Statement From the American College of Physicians and the Federation of State Medical Boards". Annals of Internal Medicine. 158 (8): 620. doi:10.7326/0003-4819-158-8-201304160-00100.
  6. ↑ Tonsaker, Tabitha; Bartlett, Gillian; Trpkov, Cvetan (2016-11-14). "Health information on the Internet". Canadian Family Physician. 60 (5): 407–408. ISSN 0008-350X. PMC 4020634Freely accessible. PMID 24828994.
  7. ↑ Verhoef, Lise M; Van de Belt, Tom H; Engelen, Lucien JLPG; Schoonhoven, Lisette; Kool, Rudolf B (20 February 2014). "Social Media and Rating Sites as Tools to Understanding Quality of Care: A Scoping Review". Journal of Medical Internet Research. 16 (2): e56. doi:10.2196/jmir.3024.
  8. ↑ Prybutok, Gayle; Ryan, Sherry (2015-04-01). "Social media: the key to health information access for 18- to 30-year-old college students". Computers, informatics, nursing: CIN. 33 (4): 132–141. doi:10.1097/CIN.0000000000000147. ISSN 1538-9774. PMID 25887107.
  9. ↑ Lau, A. Y. S.; Siek, K. A.; Fernandez-Luque, L.; Tange, H.; Chhanabhai, P.; Li, S. Y. W.; Elkin, P. L.; Arjabi, A.; Walczowski, L. (2011-01-01). "The role of social media for patients and consumer health" (PDF). IMIA Yearbook. 6 (1): 131–138.
  10. ↑ Fernández-Luque, Luis; Bau, Teresa (2015-01-01). "Health and social media: perfect storm of information". Healthcare informatics research. 21 (2): 67–73.
  11. ↑ Helve, Otto; Kattelus, Mervi; Norhomaa, Samuli; Saarni, Samuli (2015-01-01). "[Health information and social media: the doctor as a primary school teacher again]". Duodecim; Laaketieteellinen Aikakauskirja. 131 (21): 2003–2008. ISSN 0012-7183. PMID 26677551.
  12. ↑ Sarker, Abeed; Ginn, Rachel; Nikfarjam, Azadeh; O'Connor, Karen; Smith, Karen; Jayaraman, Swetha; Upadhaya, Tejaswi; Gonzalez, Graciela (2015-04-01). "Utilizing social media data for pharmacovigilance: A review". Journal of Biomedical Informatics. 54: 202–212. doi:10.1016/j.jbi.2015.02.004. ISSN 1532-0480. PMC 4408239Freely accessible. PMID 25720841.
  13. ↑ Denecke, K.; Bamidis, P.; Bond, C.; Gabarron, E.; Househ, M.; Lau, A. Y. S.; Mayer, M. A.; Merolli, M.; Hansen, M. (2015-08-13). "Ethical Issues of Social Media Usage in Healthcare". Yearbook of Medical Informatics. 10 (1): 137–147. doi:10.15265/IY-2015-001. ISSN 0943-4747. PMC 4587037Freely accessible. PMID 26293861.
  14. ↑ Moorhead, S Anne; Hazlett, Diane E; Harrison, Laura; Carroll, Jennifer K; Irwin, Anthea; Hoving, Ciska (2013-04-23). "A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication". Journal of Medical Internet Research. 15 (4). doi:10.2196/jmir.1933. ISSN 1439-4456. PMC 3636326Freely accessible. PMID 23615206.
  15. ↑ Ventola, C. Lee (2016-11-14). "Social Media and Health Care Professionals: Benefits, Risks, and Best Practices". Pharmacy and Therapeutics. 39 (7): 491–520. ISSN 1052-1372. PMC 4103576Freely accessible. PMID 25083128.
  16. ↑ Shay, Daniel F. (2014-08-25). "Physician use of social media: navigating the risks. Establish social media guidelines to protect health information, and reputation of practice and physicians". Medical Economics. 91 (16): 44–46. ISSN 0025-7206. PMID 25509476.
  17. ↑ Mechanic, David; McAlpine, Donna D.; Rosenthal, Marsha (18 January 2001). "Are Patients' Office Visits with Physicians Getting Shorter?". New England Journal of Medicine. 344 (3): 198–204. doi:10.1056/NEJM200101183440307.
  18. ↑ Castro, CM; Wilson, C; Wang, F; Schillinger, D (Sep–Oct 2007). "Babel babble: physicians' use of unclarified medical jargon with patients.". American journal of health behavior. 31 Suppl 1: S85–95. doi:10.5555/ajhb.2007.31.supp.S85. PMID 17931142.
  19. ↑ Braddock III, Clarence H.; Edwards, Kelly A.; Hasenberg, Nicole M.; Laidley, Tracy L.; Levinson, Wendy (22 December 1999). "Informed Decision Making in Outpatient Practice". JAMA. 282 (24): 2313. doi:10.1001/jama.282.24.2313.
  20. ↑ Fiscella, Kevin; Epstein, Ronald M. (22 September 2008). "So Much to Do, So Little Time:care for the socially disadvantaged and the 15-minute visit". Archives of Internal Medicine. 168 (17): 1843. doi:10.1001/archinte.168.17.1843.
  21. 1 2 A better source should be used to support this claim, although this source is good enough for how it is used here.
    • Wicks, Paul; Massagli, Michael; Frost, Jeana; Brownstein, Catherine; Okun, Sally; Vaughan, Timothy; Bradley, Richard; Heywood, James (14 June 2010). "Sharing Health Data for Better Outcomes on PatientsLikeMe". Journal of Medical Internet Research. 12 (2): e19. doi:10.2196/jmir.1549. PMID 20542858.
  22. ↑ Robinson, A; McGrail, MR (Jun–Sep 2004). "Disclosure of CAM use to medical practitioners: a review of qualitative and quantitative studies.". Complementary therapies in medicine. 12 (2-3): 90–8. doi:10.1016/j.ctim.2004.09.006. PMID 15561518.
  23. ↑ Lorig, K (Mar 9, 2002). "Partnerships between expert patients and physicians.". Lancet. 359 (9309): 814–5. doi:10.1016/S0140-6736(02)07959-X. PMID 11897275.
  24. 1 2 Eysenbach, G. (15 May 2004). "Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions". BMJ. 328 (7449): 1166–0. doi:10.1136/bmj.328.7449.1166.
  25. ↑ Barak, Azy; Boniel-Nissim, Meyran; Suler, John (September 2008). "Fostering empowerment in online support groups". Computers in Human Behavior. 24 (5): 1867–1883. doi:10.1016/j.chb.2008.02.004.
  26. ↑ Ahmad, F; Hudak, PL; Bercovitz, K; Hollenberg, E; Levinson, W (Sep 29, 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 2018833Freely accessible. PMID 17032638.
  27. ↑ Crocco, AG; Villasis-Keever, M; Jadad, AR (Jun 5, 2002). "Analysis of cases of harm associated with use of health information on the internet.". JAMA: the Journal of the American Medical Association. 287 (21): 2869–71. doi:10.1001/jama.287.21.2869. PMID 12038937.
  28. ↑ Stevenson, FA; Kerr, C; Murray, E; Nazareth, I (Aug 16, 2007). "Information from the Internet and the doctor-patient relationship: the patient perspective--a qualitative study.". BMC family practice. 8: 47. doi:10.1186/1471-2296-8-47. PMC 2041946Freely accessible. PMID 17705836.
  29. ↑ Jadad, A. R.; Gagliardi, A. (1998). "Rating Health Information on the Internet". JAMA. 279 (8): 611–614. doi:10.1001/jama.279.8.611. PMID 9486757.
  30. ↑ Purcell, G. P.; Wilson, P.; Delamothe, T. (2002). "The quality of health information on the internet". BMJ (Clinical research ed.). 324 (7337): 557–558. doi:10.1136/bmj.324.7337.557. PMC 1122494Freely accessible. PMID 11884303.
  31. ↑ Fahy, E; Hardikar, R; Fox, A; Mackay, S (2014). "Quality of patient health information on the Internet: reviewing a complex and evolving landscape.". The Australasian medical journal. 7 (1): 24–28. doi:10.4066/AMJ.2014.1900. PMC 3920473Freely accessible. PMID 24567763.
  32. ↑ Pagliari, C; Detmer, D; Singleton, P (Aug 18, 2007). "Potential of electronic personal health records.". BMJ (Clinical research ed.). 335 (7615): 330–3. doi:10.1136/bmj.39279.482963.AD. PMC 1949437Freely accessible. PMID 17703042.
  33. ↑ Tang, P. C; Ash, J. S; Bates, D. W; Overhage, J M.; Sands, D. Z (1 March 2006). "Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption". Journal of the American Medical Informatics Association. 13 (2): 121–126. doi:10.1197/jamia.M2025. PMC 1447551Freely accessible. PMID 16357345.
  34. ↑ Doctorow, Cory (5 June 2013). "Data protection in the EU: the certainty of uncertainty". theguardian.com. Retrieved 31 March 2014.
  35. ↑ Ramesh, Randeep (19 January 2014). "NHS patient data to be made available for sale to drug and insurance firms". theguardian.com. Retrieved 31 March 2014.
  36. ↑ Wolf, Asher (7 February 2014). "Thanks to Care.data, your secrets are no longer safe with your GP (Wired UK)". wired.co.uk. Retrieved 31 March 2014.
  37. ↑ Note - sketchy link requires registration. IMS Health (2014). "The use of Wikipedia in Health Care". Engaging patients through social media Is healthcare ready for empowered and digitally demanding patients?. IMS Health. pp. 16–26. Retrieved 22 January 2014. Further cited in
  38. ↑ FDA Voice (17 June 2014). "FDA Issues Draft Guidances for Industry on Social Media and Internet Communications About Medical Products: Designed with Patients in Mind". blogs.fda.gov. Retrieved 5 September 2014.
  39. ↑ Food and Drug Administration (2014-07-07). "About the Center for Drug Evaluation and Research > For Industry: Using Social Media". fda.gov. Retrieved 5 September 2014.

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