Medicine:Health information on the Internet

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A 1984 United States advertisement for access to health information with the 1980s Apple III

Health information on the Internet refers to all health-related information communicated through or available on the Internet.

Description

The Internet is widely used by the general public as a tool for finding health information.[1] In the late 1990s, researchers noted an increase in Internet users' access to health-related content despite the variation in the quality of information, level of accessibility, and overall health literacy.[2] Access to health information does not guarantee understanding, as health literacy of individuals vary.

It is believed patients who know their medical history may learn and interpret this information in a way that benefits them.[3] This, however, is not always the case because online health information is not always peer reviewed.[2] Physicians worry that patients who conduct Internet research on their medical history are at a risk of being misinformed.[4][5] In 2013, the opinions about the relationship between health care providers and online health information were still being established.[6] According to a 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."[7]

Importance of the physician-patient relationship

In cases in which a physician has difficulty explaining complicated medical concepts to a patient, that patient may be inclined to seek information on the internet.[8] A consensus exists that patients should have shared decision making, meaning that patients should be able to make informed decisions about the direction of their medical treatment in collaboration with their physician.[9] Rich, educated, and socially advantaged patients may enjoy the benefits of the shared decision-making approach more than those with a lower socioeconomic class or minority status.[10]

Patients' naive understanding of their health contributes to a range of issues, including the tendency to deviate from the physician's medical advice or to miss medical appointments.[11] Patients with limited access to health information are more likely to use complementary and alternative medicine, and fail to inform their physician about it.[11][12] Complementary and alternative medicine may not be evidence-based medicine. While physicians can work on improving their doctor-patient communication skills, individuals can become more knowledgeable about their health through patient education programs. A study by Lorig in 2002 suggested healthcare processes can be efficiently improved with patients' behavior.[13]

Social media

Social forums in which anyone can have conversations about health with their peers exist; these are especially popular among patients who want to talk about shared medical concerns with others.[14] Those who participate in online communities that discuss health issues report feeling relieved about their health worries, perceiving they have more control over their health and medical condition, gaining more medical knowledge, and having more personal agency overall.[15]

Some research studies have failed to find evidence to validate the physicians' concerns about patients receiving misinformation online or using online health information to conduct self-diagnosis.[14][16][17] Patients with chronic diseases who use the Internet to get health-related information often acquire good skills to judge the quality of information that they find.[18]

Social media platforms are considered channels physicians can use to acquire insight on their patients' thoughts.[19] Patients have increasingly turned to social media for health information, sometimes of dubious quality.[20][21][22][23] Several studies have used social media to gather data on patients' adverse drug reactions (ADRs) with generally promising results.[24]

Some commercial organizations use health information gathered from the Internet, raising serious ethical and privacy concerns,[25][26] including the risk of accidental violations of the patient privacy by healthcare providers.[27][28]

Academic medical literature

The written record of peer-reviewed medical consensus is stored in scientific journals. There has been an academic journal publishing reform since the advent of electronic publishing. Although some journals have adopted an open access template for online users,[29][30] other journals are opposed to a widening of open access publishing.[31] The open-access policy has significantly increased the accessibility of professional health information to researchers, physicians, and the public through the Internet. Some of the academic medical literature, however, may not be peer-reviewed[32][33] and users are advised to exercise caution when reading health-related articles from such websites.[citation needed]

Quality

The nature of health-related information available on the Internet is complex and its quality varies greatly by source.[34][35][36][37] The standards for ensuring quality control on the Internet have been criticized[citation needed] and no single standard is universally accepted.[38] Many researchers have investigated this issue in detail, resulting in a wide range of theories from different disciplines.[citation needed]

One study found that a correct diagnosis given by the average online symptom checker happened only 34% of the time.[39] Triage recommendations (i.e., whether immediate, normal, or self-type of care is needed) were also assessed and found to be correct 50% of the time.[40] Quality of health information on the internet becomes important in this context as both misdiagnosis and inaccurate recommendations for triage are possible. Additionally, most online diagnostic tools fail to account for the user's familial and personal medical history, including current diagnoses and conditions they possess.[citation needed]

Personal health information

For many applications, people wish to use health information on the Internet to gain further insight about a personal health concern. Because of this, the goal is often to use the Internet to find information as it is described in a person's medical record.[7] In 2013, 72% of US adults used the internet to search for health information.[41] Since the advent of electronic media, medical records have been increasingly kept as electronic medical records.[citation needed] More healthcare professionals rely on electronic medical records because it is a favorable means for patients to access their personal health information. These comprehensive systems allow patients to easily access their records without a doctor's visit, view interactive patient education materials, and use a greater range of health services such as renewing a medical prescription or making an appointment online [42] All medical records are protected health information because sharing personal health information exposes an individual to a range of harm that may result from a violation of their expectation of privacy.[43] Some privacy risks include an increased likelihood of medical identity theft, termination of disability coverage and unauthorized use of advanced medical research by third parties.[citation needed]

(As of 2000), there is a broad international debate about ways to balance patient and commercial medicine demands for personal health information with an individual's needs for safety and respect.[44][45]

Electronic medical records

An electronic medical record is a medical record stored on electronic media,[46] for example, computer servers or hard-drives.

De-identification

Main page: De-identification

De-identification is an attempt to remove patients' identifiable information from their medical records with the intent of making the information transferable without compromising patients' identities [citation needed]. The closer the data is to anonymization, the lesser its value to those who want it [citation needed]. Research companies and digital advertising companies are among the third parties that use such information in a variety of ways, which include using these patient datasets to reach their target audiences, formulate new medications or collect genetic data for government surveillance. Patients' data is rarely fully anonymized Template:Need citation. Many controversies regarding the de-identification of patient's data exist.[47]

Research using personal health information

There is a high commercial demand for accessing extensive collections of various types of personal health care information.[48]

Distribution of collections of personal health information

In 2014 National Health Service (NHS) in the United Kingdom proposed selling patients' personal health information.[49] In 2013, however, various groups had expressed worries over dangers resulting from the distribution of patients' identifiable information along with their medical history.[50]

Major sources of information

Mobile apps

Mobile apps are highly variable in the quality of health information they offer. 95% of cancer information mobile apps targeted at health care workers had scientifically valid information. In contrast, only 32% of cancer information apps aimed at the general public had valid information. Health apps have not been subject to much regulation or oversight. For example, an app by wellness blogger Belle Gibson promoting alternative, unproven cancer therapies was downloaded over 200,000 times in its first month after its 2013 debut. It reached a rank of #1 in the Apple App Store and was voted Apple's Best Food and Drink App of 2013. Gibson later admitted that she had never had cancer, as she had claimed when marketing the app.[41]

PubMed

Main page: Biology:PubMed

PubMed is a free search engine that primarily lists the MEDLINE database of peer-reviewed references and abstracts on life sciences and biomedical topics maintained by the United States National Library of Medicine at the National Institutes of Health. When readers search and try to access a manuscript of interest, they are directed to the website of the respective journal where the document was originally published.[citation needed]

User-generated content

Main pages: Medicine:Health information on Wikipedia and Medicine:List of medical wikis

In 2014, Wikipedia was described as "the leading single source of healthcare information for patients and healthcare professionals".[51] The information available on Wikipedia may not be peer-reviewed. Other wiki-style website exist to promulgate medical and heath-related information.

Regulation

In the United States, the Food and Drug Administration offers guidance for health industry organizations that share information online.[52][53]

References

  1. ↑ Huynh, Roy (17 April 2022). "How to identify health misinformation online. 10 questions to ask yourself. | Oplyfe" (in en-US). https://oplyfe.com/how-to-identify-health-misinformation-online/. 
  2. ↑ 2.0 2.1 "Health information on the internet: quality issues and international initiatives". JAMA 287 (20): 2713–5. 2002. doi:10.1001/jama.287.20.2713. PMID 12020308. 
  3. ↑ "To track or not to track: user reactions to concepts in longitudinal health monitoring". Journal of Medical Internet Research 8 (4): e29. 2006. doi:10.2196/jmir.8.4.e29. PMID 17236264. 
  4. ↑ "Getting personal. Legal liability, patient-data overload among issues making physicians uneasy over emergence of personal health records". Modern Healthcare 37 (21): 40–2. May 2007. PMID 17824189. 
  5. ↑ Huynh, Roy (17 April 2022). "How to identify health misinformation online. 10 questions to ask yourself. | Oplyfe" (in en-US). https://oplyfe.com/how-to-identify-health-misinformation-online/. 
  6. ↑ "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): 620–7. April 2013. doi:10.7326/0003-4819-158-8-201304160-00100. PMID 23579867. 
  7. ↑ 7.0 7.1 "Health information on the Internet: gold mine or minefield?". Canadian Family Physician 60 (5): 407–8. May 2014. PMID 24828994. 
  8. ↑ "Babel babble: physicians' use of unclarified medical jargon with patients". American Journal of Health Behavior 31 (Suppl 1): S85-95. Sep–Oct 2007. doi:10.5993/ajhb.31.s1.11. PMID 17931142. 
  9. ↑ "Informed decision making in outpatient practice: time to get back to basics". JAMA 282 (24): 2313–20. 22 December 1999. doi:10.1001/jama.282.24.2313. PMID 10612318. 
  10. ↑ "So much to do, so little time: care for the socially disadvantaged and the 15-minute visit". Archives of Internal Medicine 168 (17): 1843–52. September 2008. doi:10.1001/archinte.168.17.1843. PMID 18809810. 
  11. ↑ 11.0 11.1 "Sharing health data for better outcomes on PatientsLikeMe". Journal of Medical Internet Research 12 (2): e19. June 2010. doi:10.2196/jmir.1549. PMID 20542858. 
  12. ↑ "Disclosure of CAM use to medical practitioners: a review of qualitative and quantitative studies". Complementary Therapies in Medicine 12 (2–3): 90–8. Jun–Sep 2004. doi:10.1016/j.ctim.2004.09.006. PMID 15561518. 
  13. ↑ "Partnerships between expert patients and physicians". Lancet 359 (9309): 814–5. March 2002. doi:10.1016/S0140-6736(02)07959-X. PMID 11897275. 
  14. ↑ 14.0 14.1 "Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions". BMJ 328 (7449): 1166. May 2004. doi:10.1136/bmj.328.7449.1166. PMID 15142921. 
  15. ↑ "Fostering empowerment in online support groups". Computers in Human Behavior 24 (5): 1867–1883. September 2008. doi:10.1016/j.chb.2008.02.004. 
  16. ↑ "Are physicians ready for patients with Internet-based health information?". Journal of Medical Internet Research 8 (3): e22. September 2006. doi:10.2196/jmir.8.3.e22. PMID 17032638. 
  17. ↑ "Analysis of cases of harm associated with use of health information on the internet". JAMA 287 (21): 2869–71. June 2002. doi:10.1001/jama.287.21.2869. PMID 12038937. 
  18. ↑ "Information from the Internet and the doctor-patient relationship: the patient perspective--a qualitative study". BMC Family Practice 8: 47. August 2007. doi:10.1186/1471-2296-8-47. PMID 17705836. 
  19. ↑ "Social media and rating sites as tools to understanding quality of care: a scoping review". Journal of Medical Internet Research 16 (2): e56. February 2014. doi:10.2196/jmir.3024. PMID 24566844. 
  20. ↑ "Social media: the key to health information access for 18- to 30-year-old college students". Computers, Informatics, Nursing 33 (4): 132–41. April 2015. doi:10.1097/CIN.0000000000000147. PMID 25887107. 
  21. ↑ "The role of social media for patients and consumer health. Contribution of the IMIA Consumer Health Informatics Working Group". Yearbook of Medical Informatics 6 (1): 131–8. 2011-01-01. PMID 21938338. https://www.researchgate.net/publication/51662040. 
  22. ↑ "Health and social media: perfect storm of information". Healthcare Informatics Research 21 (2): 67–73. April 2015. doi:10.4258/hir.2015.21.2.67. PMID 25995958. 
  23. ↑ "[Health information and social media: the doctor as a primary school teacher again]". Duodecim; Laaketieteellinen Aikakauskirja 131 (21): 2003–8. 2015-01-01. PMID 26677551. 
  24. ↑ "Utilizing social media data for pharmacovigilance: A review". Journal of Biomedical Informatics 54: 202–12. April 2015. doi:10.1016/j.jbi.2015.02.004. PMID 25720841. 
  25. ↑ "Ethical Issues of Social Media Usage in Healthcare". Yearbook of Medical Informatics 10 (1): 137–47. August 2015. doi:10.15265/IY-2015-001. PMID 26293861. 
  26. ↑ "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): e85. April 2013. doi:10.2196/jmir.1933. PMID 23615206. 
  27. ↑ "Social media and health care professionals: benefits, risks, and best practices". P & T 39 (7): 491–520. July 2014. PMID 25083128. 
  28. ↑ "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): 44–6. August 2014. PMID 25509476. 
  29. ↑ "Home - Quantitative Imaging in Medicine and Surgery". http://qims.amegroups.com/. 
  30. ↑ "JMIR Publications". https://www.jmirpublications.com/. 
  31. ↑ "About the Journal: Nuclear Medicine Communications". https://journals.lww.com/nuclearmedicinecomm/Pages/aboutthejournal.aspx. 
  32. ↑ "medRxiv.org - the preprint server for Health Sciences". https://www.medrxiv.org/. 
  33. ↑ "Advancing the sharing of research results for the life sciences". https://www.biorxiv.org/about-biorxiv. 
  34. ↑ "Quality of patient health information on the Internet: reviewing a complex and evolving landscape". The Australasian Medical Journal 7 (1): 24–8. 2014. doi:10.4066/AMJ.2014.1900. PMID 24567763. 
  35. ↑ "The quality of health information on the internet". BMJ 324 (7337): 557–8. March 2002. doi:10.1136/bmj.324.7337.557. PMID 11884303. 
  36. ↑ Khosrowjerdi, M. (2016). A review of theory-driven models of trust in the online health context. IFLA Journal, 42(3): pp. 189-206. http://journals.sagepub.com/doi/abs/10.1177/0340035216659299
  37. ↑ Huynh, Roy (17 April 2022). "How to identify health misinformation online. 10 questions to ask yourself. | Oplyfe" (in en-US). https://oplyfe.com/how-to-identify-health-misinformation-online/. 
  38. ↑ "Rating health information on the Internet: navigating to knowledge or to Babel?". JAMA 279 (8): 611–4. February 1998. doi:10.1001/jama.279.8.611. PMID 9486757. 
  39. ↑ Compton-Thweatt, Kelli Jo (2018). "Physicians or Facebook? The effects of do-it-yourself-healthcare on modern society.". Integrated Studies: 212. https://digitalcommons.murraystate.edu/bis437/212/. Retrieved 6 February 2023. 
  40. ↑ Compton-Thweatt, Kelli Jo (2018). "Physicians or Facebook? The effects of do-it-yourself-healthcare on modern society.". Integrated Studies: 212. https://digitalcommons.murraystate.edu/bis437/212/. Retrieved 6 February 2023. 
  41. ↑ 41.0 41.1 Swire-Thompson, Briony; Lazer, David (2020). "Public Health and Online Misinformation: Challenges and Recommendations". Annual Review of Public Health 41: 433–451. doi:10.1146/annurev-publhealth-040119-094127. PMID 31874069. 
  42. ↑ "Potential of electronic personal health records". BMJ 335 (7615): 330–3. August 2007. doi:10.1136/bmj.39279.482963.AD. PMID 17703042. 
  43. ↑ (in en) The Value and Importance of Health Information Privacy. National Academies Press (US). 2009. https://www.ncbi.nlm.nih.gov/books/NBK9579/. 
  44. ↑ "Balancing influence between actors in healthcare decision making". BMC Health Services Research 11 (1): 85. April 2011. doi:10.1186/1472-6963-11-85. PMID 21504599. 
  45. ↑ National Research Council (US) Committee on Enhancing the Internet for Health Applications: Technical Requirements and Implementation Strategies (2000) (in en). Health Applications of the Internet. National Academies Press (US). https://www.ncbi.nlm.nih.gov/books/NBK44714/. 
  46. ↑ "Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption". Journal of the American Medical Informatics Association 13 (2): 121–6. 1 March 2006. doi:10.1197/jamia.M2025. PMID 16357345. 
  47. ↑ Office for CivilRights (OCR) (2012-09-07). "Methods for De-identification of PHI" (in en). https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html. 
  48. ↑ Consumer Demand for Health Information on the Internet. March 2004. doi:10.3386/w10386. http://www.nber.org/papers/w10386. 
  49. ↑ Ramesh, Randeep (19 January 2014). "NHS patient data to be made available for sale to drug and insurance firms". theguardian.com. https://www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy. 
  50. ↑ Doctorow, Cory (5 June 2013). "Data protection in the EU: the certainty of uncertainty". theguardian.com. https://www.theguardian.com/technology/blog/2013/jun/05/data-protection-eu-anonymous. 
  51. ↑ 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. http://www.imshealth.com/portal/site/imshealth/menuitem.762a961826aad98f53c753c71ad8c22a/?vgnextoid=505cde0fdbc73410VgnVCM10000076192ca2RCRD&vgnextchannel=736de5fda6370410VgnVCM10000076192ca2RCRD&vgnextfmt=default. Retrieved 22 January 2014.  Further cited in
  52. ↑ 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. http://blogs.fda.gov/fdavoice/index.php/2014/06/fda-issues-draft-guidances-for-industry-on-social-media-and-internet-communications-about-medical-products-designed-with-patients-in-mind/. 
  53. ↑ Food and Drug Administration (2014-07-07). "About the Center for Drug Evaluation and Research > For Industry: Using Social Media". fda.gov. https://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm397791.htm. 

External links




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