Health information on the Internet
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Health information on the Internet refers to all health-related information communicated through or available on the
Internet The Internet (or internet) is the global system of interconnected computer networks that uses the Internet protocol suite (TCP/IP) to communicate between networks and devices. It is a '' network of networks'' that consists of private, pub ...
.


Description

The
Internet The Internet (or internet) is the global system of interconnected computer networks that uses the Internet protocol suite (TCP/IP) to communicate between networks and devices. It is a '' network of networks'' that consists of private, pub ...
is widely used by the general public as a tool for finding health information. 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. 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. This, however, is not always the case because online health information is not always
peer review Peer review is the evaluation of work by one or more people with similar competencies as the producers of the work ( peers). It functions as a form of self-regulation by qualified members of a profession within the relevant field. Peer revie ...
ed.
Physician A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
s worry that patients who conduct Internet research on their medical history are at a risk of being misinformed. In 2013, the opinions about the relationship between health care providers and online health information were still being established. 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."


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. A consensus exists that patients should have
shared decision making Shared decision-making in medicine (SDM) is a process in which both the patient and physician contribute to the medical decision-making process and agree on treatment decisions. Health care providers explain treatments and alternatives to pa ...
, meaning that patients should be able to make informed decisions about the direction of their medical treatment in collaboration with their physician. Rich, educated, and socially advantaged patients may enjoy the benefits of the
shared decision-making Shared decision-making in medicine (SDM) is a process in which both the patient and physician contribute to the medical decision-making process and agree on treatment decisions. Health care providers explain treatments and alternatives to pa ...
approach more than those with a lower socioeconomic class or minority status. 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. Patients with limited access to health information are more likely to use
complementary and alternative medicine Alternative medicine is any practice that aims to achieve the healing effects of medicine despite lacking biological plausibility, testability, repeatability, or evidence from clinical trials. Complementary medicine (CM), complementary and al ...
, and fail to inform their physician about it. 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.


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. 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. 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 Self-diagnosis is the process of diagnosing, or identifying, medical conditions in oneself. It may be assisted by medical dictionaries, books, resources on the Internet, past personal experiences, or recognizing symptoms or medical signs of a cond ...
. 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. Social media platforms are considered channels physicians can use to acquire insight on their patients' thoughts. Patients have increasingly turned to social media for health information, sometimes of dubious quality. Several studies have used social media to gather data on patients'
adverse drug reaction An adverse drug reaction (ADR) is a harmful, unintended result caused by taking medication. ADRs may occur following a single dose or prolonged administration of a drug or result from the combination of two or more drugs. The meaning of this term ...
s (ADRs) with generally promising results. Some commercial organizations use health information gathered from the Internet, raising serious ethical and privacy concerns, including the risk of accidental violations of the patient privacy by healthcare providers.


Academic medical literature

The written record of peer-reviewed medical consensus is stored in scientific journals. There has been an
academic journal publishing reform Academic journal publishing reform is the advocacy for changes in the way academic journals are created and distributed in the age of the Internet and the advent of electronic publishing. Since the rise of the Internet, people have organized campaig ...
since the advent of electronic publishing. Although some journals have adopted an open access template for online users, other journals are opposed to a widening of open access publishing. 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 and users are advised to exercise caution when reading health-related articles from such websites.


Quality

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


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. In 2013, 72% of US adults used the internet to search for health information. Since the advent of electronic media, medical records have been increasingly kept as
electronic medical records An electronic health record (EHR) is the systematized collection of patient and population electronically stored health information in a digital format. These records can be shared across different health care settings. Records are shared throu ...
. 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 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 Expectation of privacy is a legal test which is crucial in defining the scope of the applicability of the privacy protections of the Fourth Amendment to the United States Constitution. It is related to, but is not the same as, a ''right to privac ...
. 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. , 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.


Electronic medical records

An electronic medical record is a
medical record The terms medical record, health record and medical chart are used somewhat interchangeably to describe the systematic documentation of a single patient's medical history and care across time within one particular health care provider's jurisdic ...
stored on
electronic media Electronic media are media that use electronics or electromechanical means for the audience to access the content. This is in contrast to static media (mainly print media), which today are most often created digitally, but do not require el ...
, for example, computer servers or hard-drives.


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 . The closer the data is to
anonymization Data anonymization is a type of information sanitization whose intent is privacy protection. It is the process of removing personally identifiable information from data sets, so that the people whom the data describe remain anonymous. Overv ...
, the lesser its value to those who want it . 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 . Many controversies regarding the de-identification of patient's data exist.


Research using personal health information

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


Distribution of collections of personal health information

In 2014
National Health Service The National Health Service (NHS) is the umbrella term for the publicly funded healthcare systems of the United Kingdom (UK). Since 1948, they have been funded out of general taxation. There are three systems which are referred to using the " ...
(NHS) in the United Kingdom proposed selling patients' personal health information. In 2013, however, various groups had expressed worries over dangers resulting from the distribution of patients' identifiable information along with their medical history.


Major sources of information


Mobile apps

Mobile app A mobile application or app is a computer program or software application designed to run on a mobile device such as a phone, tablet, or watch. Mobile applications often stand in contrast to desktop applications which are designed to run on d ...
s 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 Annabelle Natalie Gibson (born 8 October 1991) is an Australian convicted scammer and pseudoscience advocate. She is the author of ''The Whole Pantry'' mobile app and its later companion cookbook. Throughout her career as a wellness guru, Gibs ...
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 The App Store is an app store platform, developed and maintained by Apple Inc., for mobile apps on its iOS and iPadOS operating systems. The store allows users to browse and download approved apps developed within Apple's iOS Software Devel ...
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.


PubMed

PubMed is a free search engine that primarily lists the
MEDLINE MEDLINE (Medical Literature Analysis and Retrieval System Online, or MEDLARS Online) is a bibliographic database of life sciences and biomedical information. It includes bibliographic information for articles from academic journals covering medic ...
database of peer-reviewed references and abstracts on life sciences and biomedical topics maintained by the
United States National Library of Medicine The United States National Library of Medicine (NLM), operated by the United States federal government, is the world's largest medical library. Located in Bethesda, Maryland, the NLM is an institute within the National Institutes of Health. Its ...
at the
National Institutes of Health The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...
. 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.


User-generated content

In 2014, Wikipedia was described as "the leading single source of healthcare information for patients and healthcare professionals". The information available on Wikipedia may not be peer-reviewed. Other
wiki A wiki ( ) is an online hypertext publication collaboratively edited and managed by its own audience, using a web browser. A typical wiki contains multiple pages for the subjects or scope of the project, and could be either open to the pub ...
-style website exist to promulgate medical and heath-related information.


Regulation

In the United States, the
Food and Drug Administration The United States Food and Drug Administration (FDA or US FDA) is a List of United States federal agencies, federal agency of the United States Department of Health and Human Services, Department of Health and Human Services. The FDA is respon ...
offers guidance for health industry organizations that share information online.


References


External links


Evaluating Health Information
by MedlinePlus
How to Evaluate Health Information on the Internet
by the
Food and Drug Administration The United States Food and Drug Administration (FDA or US FDA) is a List of United States federal agencies, federal agency of the United States Department of Health and Human Services, Department of Health and Human Services. The FDA is respon ...
{{Telemedicine navbox Academic works about medicine Online services Electronic publishing
Internet The Internet (or internet) is the global system of interconnected computer networks that uses the Internet protocol suite (TCP/IP) to communicate between networks and devices. It is a '' network of networks'' that consists of private, pub ...