Health information on the Internet

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]

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]

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]

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.

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.

An electronic medical record is a medical record stored as electronic media.[34]

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.

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

Various groups have expressed worry over danger to the public which results from the distribution of collections of personal health information.[35]

In 2014 National Health Service in the United Kingdom proposed to sell datasets of personal health information.[36][37]

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.

In 2014 Wikipedia was described as "the leading single source of healthcare information for patients and healthcare professionals".[38]