The Internet gives the impression of moving in a fast forward direction. We are still just at the beginning of the Internet as a change-maker in relation to healthcare. The Internet and informed patients represent a major transformation in many areas of healthcare for the accuracy of medical procedures. Dr. Google is an important part of the patient journey and patient experience.
A mosaic of some different sources for reflection on an ongoing movement is what I am up to. This text has been created as an open thought process. I cannot promise any exact truth or everything but you will get some different angles.
Google as a digital Trinity is health, sex, and politics. The most common searches on the Internet and Google are health-related and pornography. Google is the most popular search engine today and covers nearly 90 % of all online searches. Statistics from Google portray that 1 in every 20 searches is a health query of some kind. The most common issues on Google Alert are health and politics. At the end of the documentary on Aaron Swartz, “The Internet’s Own Boy” getting access to correct medical information for personal use or medical research is emphasized. Access to information is pronounced a human right (and as such is a threat to the establishment).
Anxiety about laypeople using complex medical information has troubled doctors for more than a century. In 1898, Dr. Gersuny explained: “Sick people who… have read up their complaint in some book, are a great source of trouble to their doctors and themselves”. Other physicians complained even if the layman cannot form any clear image of anatomical or pathological conditions it does not prevent from self-diagnosis. Lay access to medical information provides opportunities and troubles… “With the new information that is accumulating daily and with the intelligent lay interest”, wrote oncologist Rector in 1936, ‘the outlook is bright’. We could say the same today”. (1) A different source explains the role of diagnosis as a way for physicians to differentiate themselves from other health practitioners and self-diagnosis is understood as linked to commercial interests. (2) People turn to the Internet because there is a tradition of being interrupted in healthcare “we tend to interrupt patients within the first nine seconds”. Dr. Google gives everybody the time they need. The phenomenon in itself is not new; self-diagnosis with the Internet has just become more general. “Physicians with higher levels of communication skill competency are well-equipped to manage the dynamics created by ‘Dr Google’ as both challenges and opportunities”. (3)
Everything from a patient’s first to second or an even larger amount of medical opinions can originate from Dr. Google. Should Dr. Google be understood as a plural state of mind – Dr. Googles? A patient consulting a real-life physician might be getting a late opinion in a real-life situation with a doctor. A comic strip shows a consultation where a physician gives a patient his computer and says: “If you want a second opinion, I’ll ask my computer”.
Google is portrayed as either the good or the bad. There have even been discussions if academic databases should have a user-friendly Google-style interface or not. The academic critique against this is that the Google interface is understood as being intuitive instead of systematic. Students do usually not have enough knowledge on search engine logic. Different academic cultures are more or less aware. In Australia, for example, information literacy is part of their course curriculum. (4) There are linguistic and symbolic ways of being systematic when using Google. Still, the filter bubble phenomenon of the algorithms is perplexing.
Networked medicine?
Physicians miss 54 % of patients’ problems and 45 % of their concerns. On 50 % of visits, doctors and patients do not agree on the presenting problem. Lack of information. Lack of communication. The culture of healthcare is a filter bubble in itself. No wonder people log on to the Internet for answers. Can Dr. Google influence health care professionals to communicate more properly with patients? Is the Internet the force that will change how health care professionals communicate or will this depend on health literacy strategies for health care providers? How many typical misdiagnoses can Dr. Google actually help with? What about teach-back and Googling? Dr. Google is also a threat to old medical traditions of silencing. Dr. Google exposes weaknesses about healthcare on a variety of levels. Care and democracy do not correspond as one would hope it could – or should. People have trouble accessing healthcare professionals. They use Dr. Google instead and this can be provocative to the culture of healthcare. Can Dr. Google make medical professionals loosen up? Will Dr. Google alter medical language and at the same time alter the course in medical and scientific reasoning? Google has brought complex medical information to anyone with a computer or an iPhone. Medical research and information are being demystified and patients are taking charge of the conversation – at least in the debate on health consumers. The medical professions no longer solely own the right to interpret. The more informed the public is the more patient safety they can add to their patient journey. Patients even know to better trust other patients with adequate information than medical authority. Patients are not always given correct treatment options or how to handle them correctly. The Society for Participatory Medicine published a blog by Dave de Bronkart a few years ago with the title: “Who gets to say what info is reliable?”. Participatory medicine concerning correct information is explained as similar to citizen/network journalism where everyone works in partnerships to produce accurate, in-depth and current information. “It is not about patients or amateurs vs. professionals. Participatory medicine is, like contemporary knowledge-building activities, a collaborative venture. Medical knowledge is a network”. (5) A knowledge network enabled by the Internet.
In social media, there is one piece of news that is shared and re-shared. The fact that the third-highest death rate in healthcare in the USA is due to medical error and errors in medication. (6) What does that have to do with Dr. Google? Actually, a lot. Dr. Google is a means for change in healthcare. Healthcare needs to be restructured. The free flow of information can be the remedy.
Internet: a visionary force
In 2000, two Swedish cyber-philosophers, Alexander Bard and Jan Söderqvist published their first episode in their Futurica Trilogy– The Netocrats. Technology is explained as the driving force of history as they create and proclaim the philosophical and real-life realm of the netocrats. Their vision is dynamic and they take the reader on an exposé of different modes of philosophical thought and societal developments in reaching their goals of thought for us. Bard and Söderqvist foresaw what the Internet as a revolutionary force would come to offer: Google as a phenomenon, the Arab Spring, how social media would come to change politics, provoke traditional media, disrupt old hierarchies, alters our sense of authority, reform class structures and relationships, transform how we do business and what we value, reconstruct exposure, create what it means to be a digital citizen, launch new moblistic movements, teach us to approach our problems differently. The Internet as a substitute for God – meaning the Internet brings people and questioning together.
Intellectual life becomes more vital
Literacy is closely linked to how we manage our social affairs and organize our social lives. Literacy is a powerful tool. What does the semantic field of literacy look like in your language? What will it tell you about the social custom embedded in relationships of power and thinking? Literacy is a variety of forms of lifelong-learning, awareness; improving awareness and helping individuals attain new skills for more effective learning. Language, literacy and the Internet makes way for new terminology and new needs because from now on we constantly need new ways of thinking to move forward. In terms of health information and structures in healthcare, these are strained due to access to information on the Internet. Health literacy is about understanding health information, being able to use and communicate health information, to achieve one’s health goals, to achieve a critical outlook on healthcare and understand the need for transparency, to develop one’s knowledge and potential and also make healthcare providers communicate more properly with patients.
“Your diogneses is anonest man’s.” (James Joyce, Finnegans Wake)
A construction of E-health literacy is specially designed toward several activities all at once and modernizes the idea of literacy. E-health literacy, generally speaking, is; basic literacy, health literacy, information literacy, scientific literacy, medical literacy, media literacy, computer literacy, search engine literacy, mobile application literacy and digital sharing options literacy. Internet literacy as source criticism is not the same thing as traditional source criticism. E-health literacy is also about networking, using online communities for feedback and critical thinking, effective reading, and writing, motivation, informed judgments, decision making, self-monitoring, solving health problems with the help of electronic and digital solutions, cognitive ability, to benefit the community, Internet literacy, and Internet source criticism. Source criticism on the Internet is about comparing sources and trying to find the original source of what one has found. What is most visible, what is not stated, importance, when was the source last updated, who is behind the source and what do they stand for? reliability, self-criticism as a reader also becomes more important. E-health literacy can be expanded into social- & political health literacy since everything we do with the help of the Internet will change our environment, habits, and attitudes. Technology will continue to expand our understanding and expectations of E-health literacy. Measurement of E-health literacy should be considered a dynamic concept. Literacy, as digital literacy, and enhanced intellectual abilities, are expected to change over time through experience, social- and technological developments.
“Our thoughts are directed by access to information.” (Alexander Bard & Jan Söderqvist)
Already in the 1950s, the word “information” started to change its outlook due to the developments of early computers. Information was from now on connected to the idea of feedback (the beginning of artificial intelligence). The foundation for the Internet was created, according to Bard and Söderqvist, in the 1960s by American defense organizations. In the 1980s, thanks to the personal computer, the Internet was turned into public property. The big shift came first by 1995 when Bill Gates announced Microsoft would from not on be concentrating on Net traffic.
“Men are suddenly nomadic gatherers of knowledge… informed as never before… involved in the social process as never before… (as) we extend our central nervous system globally.” (Marshall McLuhan)
In 2004, a discussion paper commissioned by the World Health Organization (WHO) asked if global access to health information could be achieved by 2015. Technology to support access to electronic health information (EHI) is expanding and developing. In the developing world, iPhone access is increasing. The implementation of health information with patients still has a long way to go. “Research shows that even for those practitioners able to identify and access healthcare information, there is still the question of how to incorporate into practice at individual and organizational levels.” (7) Primarily professional behavior, clinical practice and organizational structure on how to implement the use of EHI need to be addressed to meet this new world order in healthcare. The Cochrane Library has done a study and cannot even say how or if EHI improves clinical procedure or patient outcomes. Is the Cochrane attuned to what is going on? On the Cochrane Consumer Network, I found one comment concerning Dr. Google. The idea is to integrate consumers and googling the main barrier identified by Review Groups is funding. There is only one consumer comment today:” I think it does help to have a scientific medical background, but it’s not as important as it used to be because you can Google practically everything and come up with an answer. To do what I’m doing you need to be able to write… You’ve got to be able to be write in literate English”. (8) There is not much said on online health information or health literacy in the Cochrane Library.
Diagnosing Dr. Google
Every new technology has always done its own thing independently of what its creators had imagined. Bard and Söderqvist use the Lernaean Hydra, the many-headed serpent in Greek mythology when explaining the Internet. Once the Hydra is let out, there is no way of stopping it. The Internet works in contradicting ways. We have access to everything we need and do not need. We have access to things that make perfect sense and other pieces of information that are pure nonsense. In other words, it is the hydra realization of Dr. Google when one wants to consider how the patient revolution saw the light of day. It is possible to diagnose Dr. Google as being somewhat bipolar in this present time: “patients who Google live on two polarizing ends”. (9) At times Dr. Google can be understood as having a personality disorder: “The Internet is a Dr. Jekyll and Mr. Hyde phenomenon, as far as health information goes”. (10) In time, Dr. Google will even out, but should currently be considered a “medical student Google, still in training. Let’s not graduate him/her… just yet”. (11) Dr. Google is also considered its own “Dr. Google syndrome” which means the illusory charm of the search engine. (12) Female GP discussing Dr. Google: “Of course, whilst Dr. Google may win the quantity prize, size isn’t everything” then concludes, Dr. Google is about collaboration: “So perhaps we just need to embrace our troublesome chum and ‘Google’ it together?”. (13) “This is the age of being Undoctored” because as the patient can achieve health results superior to the results with the help of an IRL doctor. (14) Dr. Google exposes weaknesses in different countries in terms of having access to it: “the use of Internet for immediate information is often a reflection of access problems within many systems as well as the need for convenient trusted knowledge management.” (15) Dr. Google is a wolf in sheep’s clothing: “Dr. Internet is a popular physician who never went to medical school and doesn’t know the patient, yet dispenses not-quite-but-awfully-close-to-medical advice”. (16) Dr. Google has also been diagnosed as a know-it-all patient by physicians. (17) Dr. Google is turned into a woman: “She is one of the most famous doctors on the planet. Almost every one of your patients consults with her before they contact you. Dr. Google only performs house calls, so her hours are convenient. She does not charge patients, but her advice changes every time they ask about symptoms. She never pinpoints what is wrong, leaving patients to self-diagnose. But the most curious thing about Dr. Google is that people trust what she says”.(18) Google is working on having medically prevetted information appear at the top of search results. One of the big problems with Dr. Google is that it might make people use healthcare more than needed and at the same time the opposite. People wrongly diagnose themselves and try treatments that are easily found that can be wrong. A lucky escape can be a doctor’s opinion and treatment recommendations. Psychologists are taking care of Dr.Google by enhancing information to help patients make a doctors appointment quicker. (19) Dr. Google is more service-minded than the medical profession: “Google responds by providing an overview of possible conditions and treatments, and directions on how to locate more information online, as well as which type of doctor might be able to help”. (20) Dr. Google suffers from hubris.
Dr. Google is a commercial global big data doctor. This is where things can go wrong, as the example of the Google Flu project has shown. (21) The GFT did not work out as hoped and do we think it right for this global Dr. Google not to share the information like the idea of the Internet is supposed to be about?
“More and more patients are going to the Internet for medical advice. To keep my practice going, I changed my name to Dr Google.” (© Randy Glasbergen)
The joke just mentioned is for real: “Doctor Google WebMaster Doctors @ our Service. Dr. Google is an Internet solutions company that has a track record of delivering high-quality results in a timely manner, and at the most affordable rates. drgoogle.org/
The culture of Dr. Google is met with sharp criticism, great hope, enlightenment, frustration, and confusion. Originally, Google’s intention of having medical information as an online resource is for shared decision making in healthcare. Self-diagnosis usage is what the public has added on. The British Medical Journal published a study in 2006 where doctors were users of Dr. Google to see if the medical profession could grant Dr. Google accuracy. Dr. Google searches revealed the correct diagnosis currently in at least 58 % (95 % confidence interval 38 % to 77%). The study adds: “Searching with Google may help doctors to formulate a differential diagnosis in difficult cases”. (22) 41 % of online self-diagnosers have had their conditions confirmed by a clinician says Communicate Health. I do not know what kind of a study is referred to. (23) One survey by the SermOpolls network asked physicians what % of their patients have misdiagnosed themselves before consultation: 0-10: 10%, 11-20: 19%, 21-30: 21 %, 31-40: 17 %, 41-50: 17 %, Over 50: 16 %. This study does not say that much and I am not sure of how reliable it is. (24) Deep mind AI Google is said to give an 89% proficiency in comparison to a physician having a 73 % proficiency in diagnosing cancer for example. When several IRL physicians are involved, their proficiency sinks to 48 %. The article doesn’t explain how it reached these conclusions. (25)
“Love self diagnosing with Google. Ask it about the pain in my foot, to be told I have Bird Flu, concussion and possibly pregnant! #drgoogle ” (@Mrfiesta27, Twitter)
Wherever I go to find out about Dr. Google I get inconsistent information. Different studies and tools have different options, approaches, and agendas. It is hard to get a stable impression of Dr. Google. The landscape for Dr. Google is constantly developing and changing. Google is addressing the problems of unreliable information and has added more diagnoses to Google and differentiated the options as a kind of security measure. For example: “searches for specific symptoms like ‘headache on one side’ will display a list of related conditions, while the search for an individual symptom such as ‘headache’ will return a description of the symptom, self-treatment options and possible health-related issues to the symptom that may necessitate a doctor’s visit”. (26) Google will also “show typical symptoms and treatments, as well as details on how common the condition is – whether it’s critical if it’s contagious, what ages it affects and more”. (27)
“The fast changing world of social media is also responsible for the coining and spreading of neologisms, or ‘new words’.” (28) Will Dr. Google change the scope of medical language or the layman concepts of health-related concerns? 1 % of Google searches are symptom googling. Dr. Robert Solomon comments on patients’ Google searches and says they can be right on the mark many times and can figure out when they are wrong or at times do not understand if they are wrong. It is not that bad actually. He himself has also used free Google searching instead of regular medical sites to figure out patients’ conditions. He even records that sometimes the best information comes from discussion boards and streams of comments on blog sites. (29) There are also concerns about what happens to the online information, many sources contradict themselves and can change in a very short time span. One example on egg recommendations and pregnancy altered quickly from “will not” to “unlikely” to cause harm. One other problem is Google’s feature snippets at the top of the search page. “When someone submits a query, Google’s algorithms parse relevant search results for an answer. The text is pulled directly from sites that Google thinks the best address what the user wants to know. Different users can get different results for the same question. ‘Google actually doesn’t know what’s true and what’s not true’ says Danny Sullivan, who’s looked into the issue of false information in featured snippets for his website, Search Engine Land.” (30)
Time Magazine had a cover story in 2013 with the following: “Can Google Solve Death? The search giant is launching a venture to extend the human lifespan. That would be crazy – if it weren’t Google.”
The e-patient reference on Wikipedia explains what kind of medical information is most frequent on the Internet and what the condition of the information is like. Currently, reference no 7 “The impact of the Internet on cancer outcomes” by Dr. Eysenbach at the Department of Health Policy, Management and Evaluation, the University of Toronto in 2003. The best evidence-based information on the Internet is cancer-related: prostate cancer, testicle cancer, and breast cancer. Depression, on the other hand, has the highest frequency of unreliable sources. (31) How much and what has changed since then?
“Thanks to Dr. Google, opinion and hype on cancer ‘cures’ is drowning out evidence-based reality.” (Dr. Rosemary Stanton)
The German study, “Dr. Internet Praxis” examined the quality of 100 German digital health-related information sources. 30 % was understood as being of bad quality. The study had 6 criteria. Very good got no % at all, Good 9 %, Satisfying 34 %, Average 24 %, Deficient 30 %, Insufficient 3 %. (32)
So far, I have only had one patient experience where a physician actively used Google in front of my eyes during the consultation. It was an emergency room case. The physician needed to look up treatment options because he was not sure what was going to be the best option. When he headed on the Internet, I was firstly surprised. Does he trust the Internet that much? He explained it is much easier for him to find by googling than using a medical dictionary. He knew what sources to check to make sure to make the right pick. It was very deliberating to meet a physician who dared to use the Internet that way and not being prone to trying to put on the face of knowing it all when one does not know at all.
“He who practices medicine without a Google search page nearby is probably missing some stuff. Kevin Osler.” (@medicalaxioms, Twitter)
Sources enhance the complex image of Dr. Google: “An article in the Journal of Cognitive Engineering and Decision Making reveals that in solving complex health issues online, internet experience played no impact on performance. Younger subjects and those with higher cognitive functions were likely to use an analytical approach, manipulating keywords. However, the browsing approach fostered by older participants was just as effective, and at times more effective in solving complex health issues.” (33)
Dr. Google and the medicalization of cyberspace
Dr. Google is the medicalization of cyberspace and of the healthy. This has also been understood as a variant of medical surveillance. Medicine is moving out of its own sphere into non-medical settings and pseudo-medical areas. Dr. Google is rearranging the power relations of health-related online information. The means of production are constantly evolving. Does this, in turn, boost a greater medicalization of society in general? Will Dr. Google change our social policies? How much good or bad can Dr. Google do? Health scares “are reinforced by government and health agencies, which encourage individual responsibility for disease”. This medicalization process flows into our popular culture and influences our attitudes, values and cultural products associated with health and medicine. “The medicalized cyberspace is characterized by a process of negotiations of and around the body, whereby the investment of our identity within social welfare becomes inextricable from the meanings we give it. Within cyberspace, individuals negotiate new medical terrain, which emerges and changes almost on a daily basis. The implications of this are far-reaching, not only for how people communicate with each other about their health but more fundamentally, in how it becomes a dominant mechanism of health knowledge production and regulation.” (34)
“What if google launch AI based Dr. Google. After all everyone google symptoms and cure there. #drgoogle” (@SobinaFatima, Twitter)
The philosopher Michel Foucault warned against medicalization. Institutions create discourses. Discourses look like knowledge. The knowledge produced by medical institutions consists of different ideas, views, explanations, and narratives. It is possible for new knowledge to emerge from conflict within different institutions. Healthcare has e-scaped. Foucault pronounces three levels of medicalization: 1) conceptual/linguistic 2) institutional level 3) level of interaction. It is possible to understand Dr. Google as a free-floating medicalization institution able to reach out to a mass amount of people. This kind of medicalization can be both positive and negative. On the positive side medical parishioners can reach out to more patients, sites allow people to share their experiences, online communities and communication flourishes, isolation can be broken. On the negative side, this medicalization process means that medical knowledge can be dangerous and hold more control over individuals than the law. (35)
In the UK, a study was made and it shows how Dr. Google makes people stay at home more from work than if they would not have had access to online health information. This costs the UK business £ 1.1 bn. The top health-obsessed cities in the UK: London, Cardiff, Norwich, Edinburgh, and Birmingham. Due to this, an app, Prodigy Patient, has been developed to guide the public to better pinpoint their conditions and give seasonal guidance on the most occurring conditions. The app is also seen as a way for the public to have better-informed discussions with their doctors. (36)
The eHealth Ethics Initiative has created an eHealth Code of Ethics due to how the Internet is changing how people receive health information and healthcare. The initiative is to get people together to create an environment of trusted relationships and to assure a high quality of information and services. (37)
The NHS in England is used as an example in The Conversation when it comes to physicians using Google and AI to predict medical outcomes. Can Google be sure the medical data in medical records used is correct? Is there an algorithm to check accuracy? If patient comments are introduced properly in medical records, can a specific algorithm for this kind of information be used in a way we still do not know of? Many people are wrongly diagnosed. The medical profession can also deliberately choose not to document a certain condition in a medical record even if it a medical condition a patient has. Different medical professionals interpret and document the same medical condition differently. Medical culture is not an easy place. I, for instance, was given false a medical record after a second opinion because physicians hold each other’s backs. The correct information was given verbally. One week later, I was sent home a false account of my medical inquiry. Perhaps self-diagnosis on the Internet is ethically more secure than trying to consult the medical profession…as of yet I cannot add this into my own medical record and make sure it is taken seriously. As a patient, one instead has to change physician who then who can put everything straight in the end. (38) As far as I know, Dr. Google is not prone to the bad sides of the medical profession’s esprit de corps.
A European quantitative survey of 12 countries examining 2006 to 2016 has shown the increase in consulting Dr. Google. The percentages show a very large increase during this time span. A 44 % increase usage at the most. What the cultural differences are about can partly be understood due to differences in individualism/autonomy, economy, religion, the culture of health and the Internet differ in these European countries. Google has launched 900 different medical conditions on the Internet. Symptoms are directed toward Googles’ Knowledge Graph where symptoms are checked against medical information. This feature is available through Google’s mobile app site and apps “not through the search engine desktop website”. (39) People turn to Dr. Google for minor and major causes, different schools of thought on health and illness. Some countries allow complementary methods in medical practice. People turn to the Internet for health information concerning themselves, relatives or friends. How does all of this differ in these 12 European countries? Depending on what country one is from how does one make it work out best and why so? What about different academic, political, medical and scientific traditions? If – and when academic research is set free on the Internet – what will happen? People search for medical research on the Internet beyond medical information graphs. All these questions are difficult to address. What are the big differences between the United States and Europe? South America, Switzerland, Asia, Africa, India, Middle East, Russia, Indonesia, China, Canada, Australia?
On the 7 News Sydney news forecast on August 25, 2016, an Australian news reporter explained two-thirds of the Australian population are self-diagnosing on the Internet to avoid seeing a doctor. Dr. Google appears quite often in the news for obvious reasons. People have learned they cannot always trust the medical culture and this is a worldwide problem. The German Facebook page “Dinge, die ein Artzt nicht sagt” (things a doctor will not say) shared a graphic explanation made by the German newspaper Süddeutsche Zeitung Magazin on Dr. Google and self-diagnosis. The message showed the cynical approach doctors have toward patients’ symptoms. If patients’ say they have headaches, Dr. Google will reply: stroke or pneumonia. If patients say they have problems concentrating, Dr. Google will reply stroke or heart attack. If patients’ say, they have chest pains Dr. Google can reply pneumonia or heart attack. If patients’ explain the same to a physician the response will be: slight cold.
Google trends report a time span over the last year on symptom googling. In August 2016, symptom googling was at an 82 % level. In August 2017, it is at a 100 % level. The top five countries generally speaking are Jamaica at 100 %, Trinidad and Tobago at 99 %, Ghana at 77 %, South Africa at 84 % and the UK at 72 %. The five countries at the bottom of the list are: Mexico 1%, Italy 1%, France 1%, Indonesia 1 % and Japan at 1 %. The five most popular searches this year so far are Cancer symptoms at 100 %, Pregnancy at 95 %, Pregnancy symptoms at 95 %, Cancer symptoms at 40 % and flu symptoms at 40 %. The most common kind of search is symptomatic and in this category, the five top countries this year so far are Libya at 100 %, Sudan at 71 %, Thailand at 70 %, Jordan at 67 % and Saudi Arabia at 62 %. The five top countries, making searches for cancer are Trinidad and Tobago at 100%, Jamaica at 100%, the UK at 95 %, Ireland at 80 % and the Philippines at 87%. A look in the rear-view from January 2004 to January 2016 show the five top countries on symptom searches being: Trinidad and Tobago 100 %, Jamaica 100 %, USA 82 %, South Africa 77 % and Australia 75 %. A generalized rear-view explains January 2004 and symptom searching at 50 %, a peak in October 2009 at 100 % and August 2017 at 65 %. The five top-rated categories are: Symptom 100 %, Pregnancy 10 %, Cancer 5 %, Pain 5 % and Disease 5 %. If I ask Google trends on this last issue and add, include countries with a low level of searches the picture will alter. In this case, Grenada gets 100 %, The Dominican Republic 96 %, St-Luca 93 %, Barbados 89 % and the Federation of S: t Kitt and Nevis 85 %. (42)
On a global outreach for self-diagnosis, a source gives the following results: China is top-rated on a list of the top 6 countries. China is at 53 % self-diagnosing, New Zealand at 49 %, The United States 45 %, Australia 42 %, India 36 % and Spain at 22 % self-diagnosing. (43)
Why are these countries the top 6 self-diagnosers on the Internet? Do they have better digital health literacy skills, better educational environment, better education policies, a more paternalistic medical culture, they are smarter countries generally speaking, they have a need for more free-thinking, they trust their medical systems less than others, they have a need to be independent, they voice their concerns better than others, they are better netizens – netocrats, they own more digital devices than others, their Internet is better versed, their editorial standards are high, less medical professional per capita, higher philosophical standards or what?
- A French source says at least 70 % of the French population use Dr. Google. 75 % of the searchers are women in France. (44)
- A German source explains at least 80 % of the German population uses Dr. Google. (45)
- Every third Austrian has used Dr. Google, according to an Austrian source. (46)
- An English source claims 25 % of women misdiagnose themselves by consulting Dr. Google and 50 % treat themselves first. 30 % visited a doctor as a last resort. (47)
- A journalistic Middle East source explains from online statistics 2.47 million people Google the word headache every month. (48)
The academic magazine The Conversation reported this year four out of five Australians, 78 %, use the Internet for health information. Three out of five, 58 %, use Dr. Google to avoid seeing a health professional. This kind of information is constantly being repeated. Googling is cheap, fast and discrete.
“WARNING!!! Patient will be charged Extra for annoying the doctor with self-diagnosis gotten off the internet.”
A Spanish source explains 49 % of the Spanish population use Dr. Google. Ten years ago only 19 % did. The problem with their Internet resources is that healthcare professionals do not produce the online health information. In Spain, patients are becoming more active. Other sources are also of interest in Spain, for example, PatientsLikeMe. Health Authorities do not have to read lengthy reports about what preoccupies the Spanish population – they only need to consult Google algorithms and the most frequently used medical/health-related terms. (51)
An Italian source exclaims 80 % of the Italian population use Dottor Google and 58 % of the population trust the Internet more than an IRL medical consultation. In comparison, the Italian source asks if anybody would build their own house with the help of Google. These kinds of services actually exist. The most widespread disease is stupidity according to the Italian source and Google will not say that. In the comments to this Italian source, a respondent explains Dr. Google is better than an IRL physician since one can compare different results on the Internet. (52)
“Il dottor Google ha successo perchè i medici non sono in grado du guardare all’individup che hanno davanti #secondonatura.” (@Rep_Salute, Twitter)
Earlier this year the 20 most common Dr. Google searches in English in the US were: diabetes, depression, anxiety, hemorrhoid, yeast infection, lupus, shingles, psoriasis, schizophrenia, Lyme disease, HPV, herpes, pneumonia, fibromyalgia, scabies, chlamydia, endometriosis, strep throat, diverticulitis, bronchitis. (53) Concerning 2015, I found an article explaining the most common searches were: flu, gonorrhea, measles, and HIV. “The majority of the searches occurred from mobile devices with over a third taking place while in the emergency room or waiting room, and another 20 % during the doctor’s visit”. The three most common reasons for searches: Stuff I’m too embarrassed to ask about, Things I’m going to die from, Sh** my doctor told me but I don’t believe, so I checked Google. (54) CNN claims Americans in 2016 asked Dr. Google about zika virus, cupping, doping, TBI (traumatic brain injury). (55) An Italian survey says 75 % Italians searched for information on IBS (Irritable bowel syndrome). The higher the educational level and economic status made people go online more and the searching on IBS intensified as the condition worsened. (56) A Swedish survey tells another story. Searches vary by season and the most common searches are chlamydia, chickenpox, tonsillitis, stomach catarrh, condyloma, gland fever, swinepox, hemorrhoid, herpes, borreliosis, and TBE. (57) A German survey concludes the 50 most frequent Dr. Google searches. The top 20 of these are: thyroid enlargement, diabetes, hemorrhoid, gastritis, anorexia, eczema, ADHD, depression, diarrhea, hypertension, headache, rheumatism, insomnia, spinal disc herniation, dyslipidemia, colon cancer, HIV, anxiety, back pain, hepatitis b (the following 30 in the German list can be found in my reference list). (58)
These numbers say different things about these countries and their culture of healthcare, the politics of healthcare. The questions are: what is the most alarming issue in each of these countries and how Dr. Google exposes weaknesses or strengths? (59)
“Anything ending in ‘consult your doctor’ I will not… I have google.” (@iamtyannajones, Twitter)
Doctors are trained to look certain. It is part of their prestige and the image they wish to keep. Doctors can never actually be certain of what they are doing and Dr. Google is making this clear. E-patient Dave de Bronkart wrote a blog entry, “How can we cope with uncertainty?” for the Society for Participatory Medicine on the question of uncertainty in medicine. Everything is uncertain: the patients’ history, physical exams, test results, diagnoses, treatments and the human anatomy is also uncertain. “Doctors are not scientists: they are practical users of science who apply scientific evidence to patient care. Medicine deals in probabilities and informed guesses, not certainties”. (60)
European Commission data statistics on Dr. Google
The European Commission has recorded online health search behaviors in European countries since 2003 for individuals aged 16 – 74. A closer look at the development shows this recording has been a bit uneven. Two countries that are not part of the EU are on the data statistics and these two counties are reported as having top scores: Iceland and Norway. The UK is still on the list and will be included here. The strong progression in the use of Dr. Google is in 2009. At this point, many countries reach above a 30 % level and the highest score that year is 56.2 % by Finland. It is also in 2009 that most of the European countries are added on to the European Commission data statistics. Germany, Denmark, Finland, the Netherlands, the UK, and Luxembourg have the highest scores and this stays this way until today. In 2013, many countries start to reach the 40 % level. In 2013, Finland again has the highest score at 60.1 %. In 2016, more countries have 50 % scores. In 2017, it was the third time around for Luxembourg to get the highest score. Their highest score for 2016 is at 70.7 %. (61) One small comparison can be inserted here toward these statistics and that is the general use of the Internet. The seven countries that get 90 % scores are Luxembourg 96.6%, Norway, Denmark, UK, Netherlands, Finland, and Sweden 91 %. Sweden started out 2003 about online health information at 20.8 % and is in 2016 at 60.5 %. The different sources I have cited before on % have given different results than the European Commission data statistics. The digital tool for these statistics is in my reference list.
Google trends: the state of art of Dr. Google
Google trends on the interest rate of Dr. Google: August 2016 is reported to have a 65 % presence on the topic at about 10:30 PM with some ups and downs and landing at an 80 % percent interest on this topic just before 11 PM. 32 countries are highlighted in blue = positive results. The top five % are Sri Lanka 100 %. Pakistan 36 %, Paraguay 32 %, USA and Rumania 30 %, Canada 25 %.
The same trends from August 2016 to August 2017 give different results. The general overview is from 91 % to 90 %. 38 countries are highlighted and the % rates are generally higher. The five top % are: Austria 100%, Hungary 83 %, Germany 80 %, USA 72 % and Canada 69 %. The average result for this time span is 90 %.
The Dr. Google overview 2012 – 2017 gives another outlook. In August 2012, Dr. Google is at 43 %, a peak of 100 % in November 2013 and moving down to 55 % in August 2017. The list of countries differs again and 42 are highlighted in blue. The five top % and countries this time: Austria 89 %, Germany 75 %, USA 72 %, Hungary 66 % and Canada 65 %. The average % for this time span is 66 %.
The general overview from January 2004 to August 2017 shows 2004 beginning at 3 % in January 2004, an augmentation starts from June 2012 at 46 % and peak in October 2013 at 100 % and August 2017 receiving 64 %. The average for this time span is 41 %. A notice in 2016 explaining Google improved their methods for collecting data. This thirteen-year overview gives different results than the two previous searches and the % rates are a bit lower and a different selection of 37 countries are highlighted in blue. The five top % rates and countries are: Austria 84 %, USA 74 %, Germany 68 %, Canada 64 % and South Africa 61 %. The average for this time span is 41 %. (62)
The USA and Canada get the most hits, but not always the highest %. The USA gets 10 % higher scores than Canada. Austria and Germany get the second-most scores. Austria gets the overall highest % every time. Hungary gets the least hits in this stop five collections and gets at one time higher % than the USA, Germany, and Canada.
“Studies of autopsies have shown physicians wrongly diagnose fatal diseases in 20 % of the cases. With the help of Dr. Google, they can find the right disease corresponding to the symptoms.” (63)
A Google intern tested Dr. Google on the topic of depression and came to the conclusion depression and climate go together. This study ran across the United States over a period of nine years. If one is prone to depression, it is best to stay away from cold climates. The happiest month of the year is August. The saddest month of the year is April. The intern could even follow how unemployment in different parts of the country affects an increase in depression. Drugs decrease the probability of depression only by 20 %. The intern explains the biggest developments in public health will come from these kinds of big data analyses. “Are you investigating how weather affects migraine headaches? How chemicals in water affect autism rates?” (64)
What about November 2013 and Dr. Google?
Headlines offered by googling explain:
“Medicine changed forever after Dr. Google Granted Perspective Authority”: online symptom checkers and Dr. Google allowed to prescribe medications. (65)
“Practising in partnership with Dr. Google”: Cancerworld replicated an article published in The Oncologist. New scientific research created new challenges and more patients are seeking more information online than before. Online patient groups are changing medical conventions and facilitating clinical research. Patients are initiating research. The Internet is disrupting medicine. 40 % of the overall population and 60 % of e-patients are helped by medical online health information. Only 3 % are reported to be harmed. Online communities with patient-reported outcome measures are developing online, PatientsLikeMe.com, CureTogether.com. CancerCare is evolving into a new era complexity that requires greater individualization of treatment. The usage of the Internet is increasing. (66)
“Communicating about Dr. Google”: a patient is a queen of Googlers, physicians need a lesson on health literacy, many patients feel embarrassed because they cannot pronounce medical phrases properly. This is an article by Medivizor. Medivzor is a service that offers personalized health information (medical report and research of the Internet and research sources). (67)
“Patients increasingly checking Dr. Google”: the future of symptom checking is evolving; both patients and doctors collaborate to improve the accuracy of diagnosis with the help of crowdsourcing. Patients can submit symptom anonymously to a Crowd Med’s medical detectives. From there on a patient can easier decide if an appointment is needed or not. Physicians have a new role as information curators. The democratization of health care is pronounced. Physicians can help provide the context needed, collaborating with different sources. The patient and physician are seen as collaborating on a differential diagnosis instead of the patient just being given a first opinion. Better-informed patients are seen as easier to deal with. (68)
mobihealthnews explains data about Dr. Google from 2009, 2010 and 2012. 2009 Dr. Google is updated to be friendlier to health-related searches. In 2010 Dr. Google was updated to include results for emergency situations – also in various languages. 2012 changed how the searching worked to include symptom searching and including display of related symptoms, learn about medications, links to in-depth sources right on the search results page, answers questions on the nutritional content of food, make connections between food, Google body is introduced. In 2013, Google Helpouts is introduced offering one-on-one video sessions. (69) As I read the information on this hit, I am still wondering if I got the answer to my query or not. There is surely more to be found on November 2013 and Dr. Google – somewhere else.
E-patients: a frontier knowledge movement
In a former essay, “Revitalising Michel de Montaigne in the d- & e-patient movements”, I presented the first draft of physician and cancer patient Tom Ferguson’s account of the creation of the first generation e-patient. Tom Ferguson has also written the report, “e-patients how they can help us heal health care”, on the e-patient movement where he shows how patients can be active partners in health care and why the medical profession has to stop and listen to what e-patients have to say and take into consideration what they know and how e-patients can help the medical profession improve the overall results in healthcare.
“e-Patients report two effects of their online health research – ‘better health information and services, and different (but not always better) relationships with their doctors. /—/ Many clinicians underestimated the benefits and overestimated the risks of online health resources for patients.” (Epatient, Wikipedia)
Tom Ferguson presents some percentages of how people have perceived the information they found on the Internet from an American point of view. E-patients break the old Industrial Age paradigm where health care professionals were understood as authorities on medical knowledge or medical wisdom. E-patients manage their own care and take the initiative.
The top 5 characteristics of Tom Ferguson’s list show how hydrarealizing Dr. Google is most beneficial:
- 93 % Found the information they needed when it was most convenient for them
- 92 % The medical information was useful
- 91 % Looked for information on a physical illness
- 83 % It was important to get more information online than they could from other sources
- 81 % They learned something new
“How do we choose? How do we discern useful information from nonsense and deceitful propaganda?” (Alexander Bard & Jan Söderqvist)
Tom Ferguson explains how different kinds of patients interact with Dr. Google:
The Well: may look up information before a doctor’s visit, they may keep an eye on certain topics – for example exercise, yoga, nutrition or stress. The lightest users of Dr. Google.
The Acutes: search the Internet intensely, ask others for help, engage their healthcare professionals in the search process, ask medical librarians, use medical search services. The heaviest users of Dr. Google.
The Chronics: use the Internet on a regular basis, keep up to date on their condition/-s, look up information before a doctor’s visit, and communicate with other patients. Moderate users of Dr. Google.
“Changing the culture of medical practice will not be easy or quick. The current system is steeped in financial and other incentives that, in many ways, continue to serve as barriers to the evolution of participatory medicine.” (Charles Smith, Terry Graedon, Alan Green, John Grohol, Daniel Sands)
Tom Ferguson developed 4 categories of patients/e-patients:
The Accepting: doctor dependent and are uninformed.
The Informed: doctor dependent but informed, will go online to learn about their condition but will usually not communicate what they know.
The Involved: are medical partners to health care professionals, if they disagree with their doctor they may go against their doctor or just say nothing.
The In-Control: autonomous patients, make their own medical choices, will manage their own tests and treatments, will start local groups for other co-patients, support groups, will blog, and will help other patients, attend meetings and seminars.
What do e-patients get out of Dr. Google? Tom Ferguson presents five top characteristics:
- 89 % Profile of the diagnosed condition
- 66 % Other medical treatments
- 60 % Long-term outcomes
- 41 % Alternative or complementary treatments
- 40 % Other possible diagnoses
In France, a survey by Patients and Web conducted a few years ago into a more qualitative analysis on what sources citizens accessing the Internet for health information are most interested in using.
The top five sources from the French survey:
- 65 % Specialized academic research
- 62 % Patient association web pages and specialized health forums
- 58 % Wikipedia
- 33 % Officially produced health information
- 24 % Newspapers for health-related information and research
“Information presented as science.” (Alexander Bard & Jan Söderqvist)
Scrutinizing Dr. Google and digital health literacy
In what way is Dr. Google culturally relevant or irrelevant? What are typical setbacks on geographically tailored health information? Is it the other way around – geographically tailored health information on the Internet is more useful and makes more sense? Different countries have different editorial and educational traditions. I will just give a few examples here. For example, the Finnish school system would never admit Swedish produced school books since they find the Swedish editorial status to low. The information leaflets in medical packaging differ editorially in different countries. Some give more information that is correct and others seem to make sure the population does not get the whole picture. A multilingual patient can easily browse health information from different countries and languages and will find differences. The level of eHealth literacy will differ not just on what people learned from life or books depending on the editorial traditions in different countries. My next question: can Dr. Google help with the unequal level of eHealth literacy by forcing higher standards of information to the general public? The academic discourse on health literacy usually relates to problems of low health literacy and tries to address this. Plain language is a tool. I still see disadvantages in too much use of plain language. Plain language is a form of thought control. Plain language does not help a concerned patient think more strategically or critically about their healthcare environment or help them identify how people of authority or science manipulate them. Plain language only makes information clearer. “No published studies have shown beneficial effect on patients’ health outcomes from using such simplified materials. Even though simple materials may increase appeal and satisfaction.” (70) The quest for enhanced digital health literacy also needs to be addressed at different levels, strive toward autonomy, and help the user toward better critical judgment skills.
Studies have found that persons with higher levels of literacy can affect patients’ digital health literacy. Patients with higher health literacy are more likely to have higher digital health literacy level by using digital tools to evaluate their wellness and health goals and reported outcomes. (71)
Currently, the only bigger European study I have found on digital health literacy is a survey requested by the European Commission in 2014 with impressions on 28 member states. The European Union wants to improve health and health literacy of European citizens. E-health literacy is understood as a means to better equality in health and better access to healthcare services. The results of the survey are contradictory but tell us something important about how people perceive health-related information on the Internet and how much they think they can act upon what they find. Why are some countries more skeptical than others? How much do our intellectual traditions and educational systems differ? The fact that some countries show a high rate of satisfaction can be about more than one cultural option – the information at hand is good or not good enough or the intellectual tradition in a specific county is not good enough or better than good enough.
- The top five levels of European populations that use the Internet for health-related questions are the Netherlands at 73 %, Sweden at 70 %, Denmark at 70 %, Ireland at 69 % and Finland at 67 %.
- The overall satisfaction with health-related information on the Internet is highest in Sweden at 97 %, Ireland at 96 % and the UK at 96 %.
- The overall highest dissatisfaction, on the other hand, is Latvia at 19 %, Spain at 13 % and Germany at 12 %.
The biggest difference in health-related information on the Internet is the difference between being very satisfied or fairly satisfied. The difference is a 60 % difference in being only fairly satisfied. Men and women are quite similar and education level only makes a 10 % difference. The biggest differences concern being fairly satisfied: 75 % agree on how to navigate the Internet and 55 % disagree, 76 % find the Internet a useful tool and 45 % disagree. The causes of non-satisfaction concern the information not being reliable, commercially oriented or not detailed enough, not tailored to specific needs, lacked illustrations, difficult to understand or the information they were looking for did not seem to exist or that the information was not available in their own language. There are cultural differences in what people in different European countries react to. The highest score on information not being reliable comes from Luxembourg at 75 %, Information being commercially oriented Czech Republic at 74 %, Information not detailed enough Belgium at 73 %, Information not tailored to needs Belgium at 68 %, Lacking visual information Sweden at 56 %, Information hard to understand Portugal at 53 %, Did not find what one is looking for Belgium at 58 % and information not available the Czech Republic at 32 %.
“The benefits are enormous if you get the mix right, tread cautiously and listen to the right people. Get it wrong and you’re putting your health at considerable risk”. (72)
Nine out of ten are satisfied with the information they find. The most common issues concern lifestyle choices. Next in line comes looking for health-related topics to improve one’s health (highest rate 65 % Greece and Croatia), information on a specific condition or injury (highest rate 70 % Finland), specific information on medical treatment or procedure (highest rate 29 % Romania), get a second opinion after visiting a doctor (highest rate 14 % Bulgaria, Czech Republic, Spain and Malta).
50 % reported they were not satisfied with the information they found because it is too commercially oriented, not detailed enough or just does not seem reliable.
At least 40% think the information they find comes from a trustworthy source. Nine out of ten say use the health-related information helps them improve their knowledge of health-related topics.
- 58 % looked for information on pharmaceuticals
- 54 % looked for information on potential risks of medical treatment or procedure
- 52 % looked for information on their prescribed treatment
- 50 % looked for information on other possible treatments
Most people say they know how to navigate the Internet to find answers to health-related questions. People who have not previously used the Internet for health-related questions respond they are inclined to do so the next time.
82 % who know how to navigate the Internet find the answers to their health-related questions – compared to 64 % who say they do not know how to navigate the Internet.
63 % of the people in a good state of health use the Internet – compared to 37 % of the people who are in a poor state of health.
Are patients’ sources the one’s people and the public should rely on since they have a critical outlook on the healthcare system itself? Should patient literacy questions move closer to medical humanities and digital humanities to enhance a freer outlook? Google trends reveal UK, USA, and Indonesia as being the countries most interested in medical humanities. Medical humanities approach is needed for several reasons. I’ll just add a small portion: “The argument for greater attention to collective, relational and situated understandings of differentiated experiences of health and ill-health is timely within the medical humanities as a major political and policy changes are afoot within the contemporary provision of health care.” (73) And: “the rise of molecular explanations of illness and disease has changed the way in which diagnosis, prognosis, and therapy are understood. Theoretical reflections on medicine are lagging behind the advancements of biomedical sciences. Within this context, academics, practitioners and citizens alike have raised many concerns regarding the overall direction and shortcomings of medicine and healthcare”. (74)
Thanks to the Internet, one can find different patient sources on Twitter trying to help. Here are a few examples: @HealthResInfo: helping Canadian patients in their quest for Internet education and personalized health information. @PatientsandWeb is a French example. @DagensPatient is a Swedish source helping patients and the healthcare debate in terms of what engaged and informed patients are able to achieve even in critical terms against the medical professions. @SuissePatiente is a Swiss e-patient example, helping and instructing on how to be successful concerning online health information. @S4PM is the Twitter account for the Society for Participatory Medicine. Some more examples of contemporary patient causes and the Internet: @Sciengist, @Symptify, @informedpatients, @epaciente, @cdhh_info, @HealthEpatients, @listen2patientt, @Pifonline, @TheDailyPatient, @ePatientExp and there is a lot more out there and also in many other languages …
Do science journalists make Dr. Google easier?
Journalists can be right in their critiques and how they can help defend patients, criticize and defend healthcare providers against bad politics and investigate science and the politics of healthcare but their job is to sell news and to form an opinion. Science journalists also aim at the macro-political level concerning everything on healthcare, organizations and financial aspects, the cultural problems of research communities, pharma, why science does not get it right and more. They expose aspects of medicine that might have remained obscure and this leads to legislative and policy change in the health care system. They can protect whistleblowers. They side with patients against bad medicine, the culture of oppression from the medical profession on patients, patient rights, and patient safety. Journalists have access to sources the public might not have, at least not as easily. One still always has to have in mind that small errors can turn into big mistakes because of the width and spread they have. One still has to keep in mind they are bound by editorial and economic influences. There are journalists who set themselves free and work privately. This latter form also takes the freedom to analyze and criticize what other journalists are up to. Anybody who needs to understand more than symptom googling or find patient forums will most likely end up reading science journalists too.
The British Medical Journal published an article in April this year criticizing Coca-Cola for influencing medical journalists at a conference on obesity to say their product is fine as long as you exercise too. “Even journalists can fall victim to well orchestrated public relations efforts, regardless of the quality of the science used in these PR exercises”. (75) Science reporters take the term peer review too seriously when they write about new scientific findings “and many scientists would complain (even only among themselves) that some published studies, especially those that draw press attention, are themselves vulnerable to bias and sensationalism”. (76) Health information is dramatized or can be contradicted on the same day:” I cannot recall a situation more emblematic of the challenges of science journalism than the one pointed out to me by a physician during an office visit about five years ago. /…/ One headline, from the New York Times, boldly reads: ‘Extra Vitamin D and Calcium Aren’t Necessary Report Says.’ The other one, from the Wall Street Journal: ‘Triple Take Vitamin D Intake, Panel Prescribes”. (77) At times one gets comparative reports on drugs and the contents can be listed carefully, not always the name of the drugs themselves which makes these kinds of articles frustrating to read.
Journalists use metaphors and write to impact readers emotionally. In terms of science, it is a contradiction to how science should be read. Metaphors are ways of simplifying and narrowing science to the public. Research has shown the public has a different value system than experts, policymakers, and journalists. (78)
Here is a typical example of what one might find googling about health by journalists and as usual, everything moves in different directions. The science of psychology has been declared as broken instead of self-correcting. The science is broken frame is accused of causing harm to science that can be “mined by those interested in attacking scientific findings they consider ideologically uncongenial”. (79) Maybe the question is not about psychology being broken or unable of correcting itself. It does not seem to fit our times anymore – it might instead be outdated: “Perhaps every era needs a practice it can believe in as a miracle cure – Freudian psychoanalysis in the 1930s, CBT in the 1990s, mindful meditation today – until research gradually reveals it to be as flawed as everything else.” (80)
Medical journalists can be seen as the gateway to science. The problem with communicating health is how it is interpreted for the public. Not just that. Different countries have different policies. Are medical journalists, if they are not scientists or physicians; able to produce the kind of source criticism about science society needs? How much can science journalism help the public reach a better level of critical health literacy if science journalism starts to work at it? One would hope journalists’ writing could enhance critical health literacy since they are used to covering certain areas over time and have a head start. In other contexts, I have seen the question raised about introducing health literacy to journalism education to make them better versed on scientific research. Do science journalist help the public understand how to evaluate and use scientific research or what researchers are relevant to follow? How can science journalists be better at explaining the processes and aspects of clinical trials to give the public a better understanding? The reason I am asking these questions is that they go in the opposite direction of journalistic rules of newsworthiness that can be contra-productive (timing, significance, proximity, prominence, human interest, conflict of interests). Are science journalists really attuned to what the public and patients need and want to know? Are patients as patient advocates better than science journalists? A medical writer is not the same thing as a medical journalist. The latter requires some scientific training.
A medical student who chose to study science journalism attended a conference on the topic of science journalism and got confused. It seemed more as if journalists were to make sure people were interested in certain topics and she is not sure the public is interested. This medical student also reflects on the problem of the two different cultures science and journalism represents. Journalism being extrovert and the culture scientists need to be productive is more introverted. Scientists can find it unwelcoming to communicate with people from different fields than their own. (81) “Scientists must work to change the way socially relevant science is presented to the public.” (82) There is a lot to say about science journalism and I am dwelling on it here because much of what is read on the Internet or through social media comes from journalists. Another example shows science journalists at times do not think the public understands or wants to know. A medical student explains the opposite, any patient with a condition will want to know about everything and have access to the sources in full. This medical student proposes something that has been created: evidence-based journalism. This development is thanks to the Internet. One example is Wikitribune. They add their sources in full, even audio. Things are not taken out of context and show what someone wants to say instead of how the media wants to portray. A kind of networking journalism. (83)
“By the way, last year’s article said one in 20 Google searches was for health information (5 %) while the USA Today piece says 1 %. Hm.” (Dave de Bronkart) (84)
There is buzz on social media on how science journalists could be better at explaining the processes and aspects of clinical trials to give the public a better understanding. If one does not know what medical search engines to use for medical queries journalists help each other out and it’s just to follow what they are trying to help each other with to get a better understanding of how to use digital options and their sources. I am adding an example in this reference list. Since I am doing a lot of my Internet searching in English of course, these are English examples. (85) In the reference list, you will also find a list by the nursing profession on 25 medical search engines every professional should bookmark. (86) How many nonprofessionals use them too? How good or bad does this work out for non-professionals? From previous research, I came into touch with an example on how to understand research and what one needs to think about: learn to read the research, learn to find research, learn to follow research. You will find this in the reference list too. (87)
Screening tests cause harm. “It is a common journalistic pitfall to overlook this fact.” (88) Is another example I found on the Internet. I want to warn my reader. I have not found everything regarding science journalists. These examples are food for thought. There are surely more out there. Patient advocates write about these things too.
The University of Bordeaux in France reports a media study and how science journalists cover research. Coverage on health-related issues are overturned. Newspapers prefer to cover positive and initial studies rather than subsequent observations. Science journalists usually prefer to publish material from prestigious medical or healthcare journals. The University of Bordeaux concludes science journalists do not usually deal with the high degree of uncertainty in early biomedical studies. Scientists need to become better at talking and discussing with science journalists instead of just complaining about journalists getting things wrong. (89) Physicians and scientists criticize journalists for misleading the public about important medical issues. That they do not understand the nature of science and are more interested in sensationalism than scientific truth. (90)
Umeå University in Sweden has studied how science journalists work. The conclusions of this study are that journalists can start with a scientific lead and when they break it into the news making process, it loses its credibility. Even when the journalists claim to use science as their primary source. This Swedish study contradicts the University of Bordeaux conclusions. Science journalists are dependent on scientists to understand the relevance of the context of the innovative breakthrough that can be of interest on a societal level. Scientists can influence science journalists and the journalists’ critical gaze can be compromised. (91)
One Swedish journalist wrote about Dr. Google as a kind of mockery. The article consists of information about Dr. Google he found on the web and should therefore not be taken seriously. He begins by saying there is at least one physician who amounts to the political goal of accessibility and all-around service: Dr. Google. (92)
Science journalism is just as confusing as everything else on Dr. Google.
A Dr. Google book culture
On amazon.com, one can find a couple of books relating to Dr. Google and the e-patient movement. For example, Nicola Carr has produced a series of guidebooks on Dr. Google in an attempt to turn Dr. Google into a more holistic approach (combining western and eastern medicine) to health and enhance preventive care. The motto of Nicola Carr is: How to best treat symptoms in the short term, whilst working on the root cause in the longer term.
Journalist Andrew Schorr has written a book on how to handle Dr. Google in a medical crisis and how to navigate to the most useful resources and how to advocate for one’s own best health: “The Web Savy Patient: An Insider’s Guide to Navigating the Internet When Facing Medical Crisis”. In his book, he explains how it all starts and the reader gets to follow his patient journey. He comments himself on why he used the Internet: he was overwhelmed by the disease he has and at the same time underinformed. He did not know anything about his condition or how to keep the facts apart on what a chronic or acute form of his disease was about. To be informed made him stronger as a patient. The Internet is a great challenge to everybody: “The good and bad news about the Internet is that it offers both up-to-the-minute and archived content, which can be confusing for patients researching medical conditions. The latest and greatest – and most hopeful – treatment options for certain conditions are lumped with outdated statistics that convey what might be a much grimmer outcome.” (93)
“Our social judgments, our skills, and even our thoughts are indelibly affected by the nature of the technology that supports us.” (Donald Norman)
Healthcare writer and consultant, Nancy B. Finn, has written a book for enhancing e-patients and patient empowerment; “E-patients live longer The Complete Guide to Managing Health Care Using Technology”. She gathers information on a great variety of information needs of patients and how to be prepared for what’s to come in health care and how to manage everything that happens. Technologies are explored that make way for more personalized medicine. The idea of an e-patient is also about efficiency in health care, a better-informed patient can help reduce costs. The book is to help patients make sure they can protect themselves and actually get the best care.
Some people who started out reading books on medical concerns have later chosen to just turn to the Internet even if they have been fully recovered.
Dr. Google up for debate
Do people turn to Dr. Google because they never have authentic encounters in healthcare? Do people no longer trust they can have functional working relationships in healthcare and therefore prefer anonymous Internet sources? Dr. Google is often used for information one would have hoped to be given in the healthcare setting. Many google on nutrition to combine with other treatments to elevate their health and outcomes. Different articles give different clues to the benefits of Dr. Google. At times Dr. Google seems only to be about Internet searches. The concept of Dr. Google can be expanded to embrace social media options. I have tried to stick to the Internet and some digitalization trends and ideas. I realize that does not work out properly. Dr. Google can be about everything digital concerning e-patients, online patient communities, social media (Dr. Facebook, Dr. Twitter, Dr. Yahoo, Dr. Bing, and Dr. Microsoft have also been invented) even online data-sharing platforms. Do people really get a hold of what they need on the Internet? The New Yorker recently published an article on the question of who owns the Internet: “As the Web has grown, however, it has narrowed down.” Google, Facebook and Amazon control what is allowed. They are gatekeepers and actually a contradiction to the idea of an open Internet. When newspapers and magazines require subscriptions to access their pieces they are buried: “articles protected by stringent paywalls almost never have that popularity that algorithms reward with prominence”. (94) The more I dig into this the more slippery it gets.
Newspapers, bloggers and patient- and healthcare communities write about Dr. Google all the time. Over time attitudes toward Dr. Google has changed to become more positive (and some more negative). Cultural differences appear. The different voices stand for different dimensions. I cannot include exactly everything from the Internet but will share what seems to be typical.
Ten years ago a blog post, now on the Society for Participatory Medicine (former e-patients.net) explained how the digitization of information will change the way we define and view knowledge. Patients share and find the knowledge they need and decide what is the best course of action. “This concept blows the minds of traditional physicians /…/The horse is out of the barn. /…/Physicians will learn more than ever from their patients. Patients will increasingly teach each other. /…/It will be a wild exciting ride for those of us who are ready to ‘strap it on’.” (95)
Dr. Google is forcing the culture of healthcare to wake up and become more real. Communication problems between patients and physicians have a long history. If the culture of googling actually can change the culture of healthcare that is at least a step in the right direction. A course has been created to help physicians become more entrusted by patients to stop them googling. The learning objectives are: to become the patient’s educational need, transform your practice to become a proactive patient education forum to increase engagement and satisfaction. (96) Another side of this is that Dr. Google also forces the medical profession toward a more person-centered care approach. The flow of information between the patient and the physician changes character and the physician also has to learn to listen better in terms of understanding what the patients’ expectations are: “with Dr ‘Dr. Google’ becoming more influential in the consultation room, it is more important than ever /…/ to understand how to manage patient expectations”. (97)
Dr. Google represents a way for healthcare to improve the patient experience. If a physician is losing patients to Dr. Google some changes need to be made to combat Dr. Google: turn your organization into a Learning and Service Center. Explain your specialty and the common symptoms of the diseases you treat, target patient types based on their disease states. (98)
72 % of the people who turn to Dr. Google at the first signs of feeling sick also turn to Dr. Google after visiting an IRL doctor. The information they gather usually makes them alter their treatment plans. (99)
ZdoggMD explains Dr. Google in healthcare will not go well until the time span and administration processes in healthcare have been modernized to fit what is coming at them. He would like to empower patients thanks to Dr. Google. As the situation looks today it does not work. (100)
Dr. Google has more relatives. We could add Dr. Wikipedia to the list. Wikipedia is understood as one of the most consulted online sources when it comes to diseases and health-related questions. Therefore, “health professionals have a duty to improve the accuracy of medical entries in Wikipedia, according to a letter published /…/ in Lancet Global Health”. (101) This is where I wonder what will happen if researchers on a global perspective collaborate. Cultures of science differ.
One of the most alarming Dr. Google case so far seems to be the example of Bronte Doyne. She had a rare form of liver cancer where the recurrence was left undiagnosed. In her own words: “Can’t begin to tell you how it feels to tell an oncologist they are wrong. I had to, I’m fed up trusting them”. (102) Bronte and her mother turned to the Internet for help and could find confirmation on Bronte’s symptoms that her cancer was coming back. Just because they used the Internet, the doctors refused to listen to what they said. Bronte Doyne died of her cancer because the medical profession did not react in time to what was going on – even if it had been made clear that the cancer could return after the first wave of successful treatments. The NHS at the time made a public apology and understands they have to find better ways of cooperating with patients and the Internet. Dr. Google is here to stay. Most cancer patients will have been on the Internet and Dr. Ranjana Srivastava concludes: “I resent Dr. Google being the silent spoiler in my life but only until I recognize how the internet has allowed patients to seek counsel that would have been unthinkable in another era, and access to often high-quality information written with the patient in mind. My last few patients have probably learned more about clinical trials from the internet than from me”. (103)
“With your access to the Internet & my experience as a Doctor, imagine how we can redesign Healthcare together?” (3G Doctor, mug)
A strange example with Dr. Google is the example when a physician used Dr. Google to treat himself with the advice on the Internet. It turned out all wrong: “A patient of mine with Crohn’s disease has stopped his medications and was experiencing a flare. He had heard about stool transplants (still experimental) and felt this was the right treatment for him. After consulting a do-it-yourself internet site, he transferred his wife’s stool into his intestines and suffered even more debilitating symptoms. He eventually agreed to restart his prior therapy, improving a week later. My patient is a physician”. (104)
Another example of a physician as a googling patient goes in the opposite direction as the example just mentioned. The case of an ankle fracture. She googled and found lots of treatment options to try and the stories she read made her sad. “Would I ever get to play tennis again like I had in my college years? Dr. Google was making a very strong case for a big fat, NO.” She didn’t follow any of the Google advice given, stuck to what her surgeon meant was best and in her case that worked out just fine. (105)
Dr. Google as a positive option is when people realize quickly that they have to get a doctors appointment. In these cases, Dr. Google saves lives. Dr. Google can also help people avoid unnecessary ER visits and is seen as cost-effective unless symptoms progress and further medical attention is required. (106) Google has collaborated with Harvard Medical School and the Mayo Clinic in the United Stated to improve the status of health searches on Google. (107) In 2011, The Conversation had an article that explains Dr. Google is not the place to go. The Conversation mentions two other options. WOT (Web of Trust) a browser plug-in that rates medical research and information from consumer reviews on trustworthiness, reliability, child safety, and privacy. The HON code (Health on the Net Foundation) application is also mentioned – it is an application that can be downloaded on the computer that will check information for accuracy. (108)
The web is an integral part of the patient journey. 43 % of visits to the hospital and clinical sites originate from a search engine. 86 % do a health search on the web before an appointment. The younger generation uses Dr. Google more than elders, at least 78 %, but these elders are catching up, 67 % want access to health information. (109) A different article explains only 18 % of elders go to the Internet for online health information. The % is rising – slowly. (110)
The symptom checker idea is still in its first-generation phase. “It is inevitable that such tools will remain part of the process patients go through when researching their symptoms.” (111) Depending on Big Data development or what technological paradigms that come after things will become more accurate. This movement has inspired clinicians and healthcare to cooperate in new ways with patients. In Sweden, a system for self-diagnosis has been made with Karolinska Institutet for the most common diseases (arthritis, diabetes, breast cancer, heart failure) to help involve patients in their self-diagnostic process. (112) It is also possible to refer oneself to a specialist directly from the self-diagnostic tool. What I am missing on these kinds of tools is exclusion options. Symptom googling and symptom searching is a kind of all-inclusive business. Patients need as much help in understanding when it’s not the case and how to relate to typical and atypical symptoms. I guess these innovations will also help the public to better understand how hard it at times can be to actually put the right diagnosis on the right patient.
The Guardian Australia explains research done by the Queensland University of Technology. Search engines are no good as diagnostic tools. When people type in common language descriptions, search engines gather the wrong kind of information. Four or five of the first ten results could be relevant and only three out of ten were highly relevant. On the other hand, if people searched for specific conditions; breast cancer or celiac disease, they would get accurate and reliable responses. (113)
One article articulated the fact that googling makes it easier for patients to describe and analyze their symptoms (enhancing medical literacy). One physician admits Dr. Google forces him to become better at communicating with patients: “When patients come in having read about what might be wrong with them, it can help me guide my questions and get to the source of the problem much quicker. However, if you go against their opinion you have to do so in a way that is very persuasive and explains precisely why you don’t think they have whatever condition they have reached. Good communication skills are paramount.” As this technology develops and improves the quality of the information will become even more beneficial “online healthcare information and self-diagnostic tools will be felt more widely”. (114) The idea of self-diagnosis and the Health cards commented as Google option “self-diagnosable” and the fact that Google suggests treatment options is seen as dubious. “The information provided by Google has been criticized for being too simplistic and encourages a cookie-cutter approach to self-diagnosis. So far, the feature fails to recognize that every individual has individual needs and can present incredibly differently, requiring a variety of different treatments.” (115)
Dr. Google is also portrayed as the tool that will bridge the gap to improve older people’s health. Digital health literacy concerns of the elders are problematic and the people who seem to benefit the most from an online presence seem to use it the least. The European Union has launched a program, Grandparents, and Grandchildren, to help the elderly become more digitally literate with the help of the younger generation. (116)
Since Dr. Google and the new experiments and expectations of Dr. Google mostly appear at first in English a French article commented that the second time around when other countries and other languages catch on they can start at a better level of understanding how to make the best out of Dr. Google. If there is more frustration from English speaking countries or countries with smaller languages there is cause. The biggest challenge is when everybody really does have the same ethical and qualitative chance of getting everything right from an early start. (117) Some voices think that if the public is reading reliable and authoritative sources on the Internet they will not get things wrong. (118) Authoritative sources do not always give the best information. Politics, the culture of health, culture of science, differences of the density of scientific cultures creates a variety of value systems when it comes to digitalized health-related information, cross-cultural validations problems can also make things harder.
Pediatricians in the USA are complaining of the loss of patients due to Dr. Google. “Why are our patients doubting us? We are not the enemy. /…/We find our selves exacerbated and powerless against this Dr. Google, who has access to all information, but no reputable filter to weed out what was useful scientific data versus that which was inflammatory and unproven.” (119)
The idea of self-diagnosis due to the Internet has inspired a group of Mexican researchers to create an app to enable people for early detection of eye disease. The idea is to enhance preventive medicine in a low-cost and efficient way. It is cheaper to prevent than cure blindness. Their hope is a rural medicine outreach. (120) This is just one of many ideas going on in the world today. I remember reading an article on a connected bathroom mirror that helps people detect a state of illness at an early stage… diagnosis kit, telehealth, connected health … None of all of these ideas would have come to life if it were not for the Internet…
Positive features about Dr. Google can be to look forward to patients having objective data through sensors, labs, imaging, genome sequences that will empower people to be active in their own care. The more correct information a person has, the better informed a person’s healthcare decisions get. “If Google does it right, it should provide a nice alternative to random Web searches about health-related topics.” Physicians need to be willing and interested in discussing the information patients need to talk to them about. (121)
When patients refer to information from Dr. Google and discuss treatment options with physicians from different specialties, this actually helps these different specialists become better aware of treatment options and bridges gaps. For example, Australian radiologists treat prostate cancer using radiation while urologists use chemotherapy. Patients teach physicians about treatment options they would not have thought of. Physicians find it easier to collaborate with better-informed patients. Physicians themselves use the Internet to be updated. Dr. Google and other medical reference sources help keep the population more up to date too on the latest research. The more patients know the more the medical profession has to know. An informed patient can make sure testing that is required is done properly. Before doctors could just tell patients what to do or what was to be done. Now they have to interact instead. If a patient has used Dr. Google for self-diagnosis a physician can offer a broader understanding or offer other ways to approach the health-related problems. Dr. Google is forcing doctors to think more. (122)
Doctors debating Dr. Google say a variety of things. Googling is good because it makes people engaged in their healthcare. Googling is good because it is efficient, easier to reach a diagnosis together and then the physicians do not have to put the time in explaining as much as before. Googling is good for discussion. Googling is bad for patients’ morale since it can lead to false security that nothing is wrong or delays their diagnosis or makes them convinced of things that are not really happening or patients become deceived by all the exaggerations found on the Internet. Most of all, patients need to be better educated on how to handle science, research, and the Internet. (123)
One patient with a rare disease has explained she has to google because healthcare providers are not updated regularly and even tend to avoid new information altogether. As a patient one does not have the choice not to google if one wants to make sure of patient safety for one’s own sake. This one patient explains the need for googling because the Swedish patient associations do not give enough information. She at times goes to find the web pages on patient associations in other countries concerning her disease. In other countries, she notices they help out with the latest research better than in Sweden. She recommends healthcare providers are given time to enhance their own knowledge and this should be done regularly. As long as the healthcare system is not capable of ensuring higher standards for healthcare professionals the worst thing is how they, in turn, make fun of patients who do their best on trying to be up to date. “What am I as a patient supposed to do when nobody in healthcare even tries to help me understand more?” (124)
Does Dr. Google create a culture of laziness? Technologies in healthcare make healthcare providers rely on data instead of checking a patient properly. The physician blames the medical culture and medical education for it – creating MacDonaldsdoctors. Medical students are too often kept in their comfort zones. “Some have debated whether Google makes us stupid. Certainly, handheld computers and Dr. Google have made endless copied, compiled and condensed information immediately available. Is this information too easy to access, making young (and older) physicians unintentionally lazy? Or has our laziness created Dr. Google? Probably a bit of both.” (125)
Doctors seem to prefer people read information created for them by professionals. They do not like patients poking their heads into medical research. I recently found such a page: “For good or bad, Doctor Google, is a presence in our lives. /…/We highly recommend our patients look here first for health information before exploring the health maze that is Dr. Google”. They offer a collection of links on a few topics and one connected to quality registers. As far as I have come to know in trying to understand what is going on, people want to read the latest research too. People want to compare sources on more than one disease. (126) People are being warned of using the information wrongly: “that doesn’t mean these search results are intended as medical advice… What we present is intended for informational purposes only – “. (127)
The culture of the Internet facilitates for patients to get in touch with patient communities for tips and collaborating. The Internet offers a variety of opportunities for patients to solve daily issues clinicians never help with. The culture of clinicians could do well to get inspired by patient communities on getting better at collaborating with other healthcare providers and patients if they took the time to get to know the culture of online patients and the exchange that exists in patient associations and support groups works. (128)
Dr. Joyce Lee, whom I have seen on Youtube, is a doctor discussing the culture of health care has to change has also joined the discussion on Dr. Google. In the British Medical Journal, she gives a two-sided account. Remember the Belgium Government had an Ad Word campaign, Don’t Google IT, to stop the Belgian population from googling their symptoms? Joyce Lee explains further, doctors use Dr. Google just as much as they use everybody else. “The bottom line is that you often won’t find the answer in that dusty medical textbook, published four years ago, and the network man actually protects us from the mistakes of any lone doctor.” The poor design of the healthcare system leads us all to Google. Google is the gateway to communities of expert patients on social media sites. Google and the Internet are medical therapy. (128)
A team of Belgian researchers found Dr. Googling is good for the patient-physician relationship because it leads to a better mutual understanding of symptoms and diagnosis. Dr. Google is seen as a healthy thing. Two-thirds use Dr. Google before a consultation. More than half had more confidence in their physician after searching online. Two-thirds did not feel reassured by their online searches. The majority of the Flemish population would still visit the doctor after online health information retrieval. This study about the Flemish population contradicts previous studies where physicians were said to contradict information patients brought with them because they feel threatened their professional expertise is being disregarded. (130)
The Facebook page Dr. Google News is a page about surfing and wellness. They give tips healthcare providers do not provide. Anybody can connect to a variety of pages related to scientific research and parts of what exists as open access when there is a need to narrow the scope. On Facebook, there are also e-patient community pages, E-Patient Connections, to help enhance patient empowerment. These groups write about patient advocates and the Internet. Social media is a great place to find people in the same situation as oneself when struggling against the culture of healthcare. E-Patient Connections also organize conferences. An example of a posting on E-Patient Connections explains the benefit of being an e-patient: more likely to bring ideas to their healthcare provider, understand side effects better and earlier, better at taking an active role in their care. (131)
“It is no longer good enough to blame Patients for wasting your time when you insist they visit you for things that you could’ve fixed for them just by pointing them to the resource on the Internet.”
The KevinMD blog offers a variety of voices and Kevin MD himself can be found on Youtube discussing how to make it easier for patients to navigate the Web – to teach them the Wisdom of the Web. He tries to help patients to stay away from sites with too much commercial content and recommends them instead to try to search for academic research on the Internet. “It is time to stop debating whether patients research their own symptoms. /—/Helping patients navigate through the trove of health information on the web is a new physician responsibility for the 21st century, like it or not”. (132) A guest blogger on the KevinMD blog who is fed up with patients misdiagnosing themselves mean healthcare providers from now on have to help patients how to use the Internet more constructively by recommending accurate keywords that apply to their disease and suggest specific procedures on how to look the right kind of information up. “With millennials seeking more medical care, social media revolution and Internet-mania will further impact patient behavior. Providers have non-conformal tasks: to be aware of these new trends and influences, in order to integrate them into their practices and reinforce patient-doctor relationships.” (133) Another physician thinks e-patients are a good thing and wonders if the medical culture is ready for what it may bring. He is a bit surprised that the patient engagement movement has not been met with greater familiarity. Patients are now addressing physicians with sophisticated questions about their pathology, treatments and clinical trial options. He has come to understand that an evidence-based approach also has to take into account the individualized side of treatment and what goals the patient has. (134) Another physician guest blogger explains Dr. Google does not care about your health – but he does since he loves the study of medicine “come see me sometime” is what he wants instead. (135) An engineer also gets to explain himself on the miracle Dr. Google is creating. Thanks to Dr. Google now even local doctors have access to indexes of medical information from around the globe. Patients who go hunting for disease information online actually help their doctors locate relevant information since they have more time on their hands. Doctors should provide the correct keywords relevant to a patient’s condition. “Has anyone tried this approach? I have, and my personal doctor keeps asking for more”. (136) Another physician explains the medical culture, as opposed to the Internet. Physicians are very careful with their speech and rarely speak in absolute terms since there are no 100 exams or lab studies or scans. He suggests everybody to try to just look up causes of dizziness, fever, or fatigue and is sure this will crash the computer. “If we use the patient’s Google search as a roadmap, then the diagnostic journey is likely to be an endless excursion into the abyss.” (137) Another physician explains she is happy Google is evolving in diagnostic terms “I often refer patients to specific websites for information after I’ve made a diagnosis”. (138) Physicians have a hard time understanding the Internet can be used as a diagnostic tool. The information explained after a medical exam is often quickly forgotten and this is where Dr. Google comes in as a reminder. There are problems with the Internet. An American Internet Pew Survey explains many hit a paywall and cannot access the information they need access to. 83 % of the people who cannot access the correct information try for other places on the Internet after failure. Only 13 % go directly to a health site. (139) The problem with Dr. Google is that Dr. Google does not know you. Dr. Google has never asked you any questions. You have asked him and he provided an answer. The information is not tailored to your history, environment, and the socioeconomic and external pressures on you. (140) One physician explains people start to consult Dr. Google because they feel they are not being cared for so they take things into their own hands instead. “I completely agree with their frustration, but disagree they should walk this hazardous medical road alone”. (141) Another physician exclaims patients should not have to feel afraid of asking questions. Is this really what physicians want? Dr. Google has not replaced physicians. Shouldn’t an informed patient be understood as an engaged patient? The mug with the inscription “Please Do Not Confuse Your Google Search With My Medical Degree” has made its rounds on social media and many healthcare professionals had a “feeling of vindication”. (142)
By trying to understand how physicians use the Internet, there is an uncategorized blog on KevinMD and I think he wrote it himself but I am not sure. Google or the Internet is the first port of call for most people today. On this particular blog, the writer explains the Internet from a professionals’’ point of view. If queries are not found on UptoDate then eMedicine is useful. For urgent cases, Google and specific topic followed by emedicine usually bring appropriate articles. The Google Toolbar is recommended. If other physicians have smart tricks and tips the writer would be glad to hear about them…(143) Do patients proceed in the same way? On the page the-best-medical-search-enginge.org/content/view/4/6 there is an entry on how to use Google with a medical mind “How can Google be used in medicine?” (144)
The truth about the mug “your googling and my medical degree” is explained by Dave de Bronkart. It does not mean a patient thinks he or she is a doctor. It is a sign of patient engagement. Patients should, of course, think for themselves, but they should not think they have the training and clinical experience physicians have attained. In November 2015, he explained he got the picture of that mug flung at him in social media at least 25,000 times. The idea of the Internet and patient – doctor participation is about solving diagnosis together as an open collaboration. Neither the doctor nor the patient is right to begin. In their collaboration, they will become so. (145) The Internet brings in the idea of the networked flow of information and alters the course of clinical practice. This “digitations of information is changing the way we define knowledge”. In the future doctors will learn more from their patients. Patients are teaching other patients. Social media has moved into the medical world and patients do not experience illness as anybody has ever written about it before. Patients are sharing outcomes and information online and this is reshaping how we understand and use this kind of information. (146) Doctors have to understand one doctor cannot know everything and the Internet can help improve outcomes. (147) Dr. Danny Sands, one of the founders of the Society for Participatory Medicine tweeted an article by the Daily Dot with an example where a woman managed to self-diagnose herself thanks to Imgur. By sharing information and interacting, she got in touch with other people with the same condition as herself and was able to reach the right conclusions. She had previously met a variety of physicians who had been unable to diagnose her correctly. (148)
Few American seniors consult Dr. Google, only about 20 % do. A study was made on elders who do not live in nursing homes. Use of the Internet decreases after the age of 75 and even more so after 80. This can be a disadvantage to the elders since more hospitals do business online to improve efficiency. “This means that seniors who can’t or don’t want to go online to get patient education information or to communicate with their doctors are going to find that it will become harder to get what they want in the more traditional ways like phone or email.” (149)
As the new Dr. Google functions are added and improved and 900 diagnoses were launched in Australia earlier this year an article exaggerates how people perceive online health information. Cyberchondria is at stake, they say. The newspaper wants to know how it goes: “Have you freaked out by googling symptoms? Or has it helped save your life? We want to hear from you: hack@abc.net.au or send us a message on Facebook”. (150)
Dr. Google is more accurate now: “I have noticed that the accuracy of Internet self (or family) diagnoses has increased markedly over the last five years. I am no longer immediately dismissive, and I’ve had more than a few patients correctly diagnose themselves with something pretty rare, generally genetic”. To succeed a patient needs to be precise instead of using too much common language.
I have even come across a specialized medical business citing research on their front web citing explaining IRL physicians are better at getting the diagnosis right compared to Dr. Google: “And the winner is…”. They are referring to a study published in Jama Internal Medicine on the comparison of physician and computer diagnostic accuracy. (151)
Stop Dr. Google
The term cyberchondria is a “portmanteau neologism”. Hypochondrium derives from Greek meaning the region below the breastbone. (152) Cyberchondria can be added to the phenomenon of hystory, meaning a dialogue about a condition is more influential than the facts and has to do with the fact that there are things in the world that still remain unknown. (153) An Internet reference claims the concept cyberchondriac was created in 2009 by an Australian physicians association because patients were putting cancer testing up for demand more than before. It is possible to trace it all. The most common Dr. Google search is: blood+cancer+symptom. (154) Another reference claims the London Sunday Times already wrote the word in 2000 as: “the deluded belief you suffer from a disease featured on the Internet” and the BBC News spoke about it in 2001 as an “Internet printout syndrome”. Cyberchondria is often mixed up with hypochondria, but should not since cyberchondria literally means: “online concerns about health”. The problem of using the Internet for online self-diagnosis is that people tend to focus on the first couple of results. Search engines use mathematical algorithms and the manner in how people use the Internet in a general manner alters what comes up in the first searches. Some recommend using a health-related search engine instead of Dr. Google and that it is better to read the information on non-profit health sites. (155) At times, this problem is called: Instead of Internet medicine, we have cyberchondria. Google has been trying a tool where a screenshot “talk with a doctor” appears and the video chat. Facebook is a threat to Dr. Google since it more easily can connect them to medical professionals. The advantages of Google is that it is good at sorting information, not at getting people to look it up for you. (156)
- One study found Dr. Google delayed 43 % women and 37 % men from seeing an IRL doctor. These groups of people are more likely to return to the Internet for more health information. (157)
”The number one enemy of someone with disorders is Dr. Google (’cyberchondria’).” Google presently offers at least 2.42 million web pages on cancer. “Every possible symptom can be linked to every possible diagnosis, by at least one disreputable source or another”. (158)
There is a difference between what a cyberchondriac is in negative terms and what an e-patient is doing and how they use the Internet for finding correct medical information. A cyberchondriac will usually look at different kinds of information up on the Internet. An e-patient, on the other hand, is a person struggling against the medical culture and trying to keep track of certain kinds of information on complicated, hard to diagnose (invisible diseases) or rare medical conditions (perhaps even in conditions that do not yet have the state of diagnosis). An e-patient will also turn to online groups for help. The Internet is of great help when people in one’s own surrounding have stopped listening to them and their health concerns. (159) Dr. Google should never be ruled out as just a cyberchondriac thing. The culture and politics of healthcare are also responsible for people heading out on the Internet.
Q. What symptoms did you Google?
A. Wisdom teeth symptoms.
Q. What was Dr. Google’s diagnosis?
A. Google said I was having a really bad ear infection.
Q. Did you seek a professional’s opinion?
A. Yes, Google was correct about ear infection however suggested treatment was incorrect. (160)
In this digital age, the boundaries of liabilities are never certain. Google has argued in its defense that it should not be treated as a publisher just because it displays websites created and copyrighted by others (Google is at times taking away displays either due to copyright issues, abusive comments, and terrorism – so is Google still allowed to not call themselves a publisher?). “Google also argued that it should not be responsible for search results produced automatically by its search algorithms.” The South Australian Supreme Court has found Google responsible when its search results link to defamatory content. Dr. Janice Duffy has been trying to clear her name for years when people Google her name. (161)
“why go to the doctor when google already knows you’re dying:” (@AyeshaTape, Twitter)
On Twitter and Facebook there is an account called Stop Dr. Google @StopDrGoogle on Twitter). Another Twitter account is @StopDr.Googling. The Stop Dr. Googling account wires out statistical information that can sound like the following: “A woman spends 52 hours a year on the web for health searches, but only sees a doctor on average 4 times”. Or: “Stay tuned to find the best alternative, trusted online sources if you can’t make it to the doctor”. Or a visual explaining: “75 % of people surveyed said Dr. Google gave them an incorrect diagnosis. Is that safe percentage?” The more I try to make sense of Dr. Google the more inconsistent everything is.
“Just stop googling/Information is addictive/More information doesn’t equal accurate information.”
Stop Dr Google give tips on what healthy online behavior for health information is: make sure you are reading a reputable source, be specific with your choice of words, vague symptom searches will give too much crazy information at once, be consistent and read many different sources to improve accuracy – relevance, and validation of online self-diagnosis, don’t panic, accept self-diagnosis can be wrong. (163)
“My heart is twittering, my stomach feels bloggish, and I make a googling sound when I breathe.”
Tanya Feke had a blog entry on the KevinMD blog “Dr. Google should be sued for malpractice. Here’s why”. Dr. Google promises a quick reply, no testing, no lab, information is often unreliable due to outdated content, biased information, can you really trust the people posting medical content on the Internet? Are the references accurate? If Dr. Google were a real person he would be sued for malpractice since he gives inaccurate diagnoses, promotes unnecessary testing, causes worry without a proper evaluation, breaks the tenant in the Hippocratic Oath: do no harm. (164)
At times one can find stupid attitudes against cyberchondriacs –the Internet makes them worry more about illness and conditions such as losing their earrings. (165) One doctor proclaimed cyberchondriacs understand a bump on the head as a brain tumor. (166) Or there will be comments’ saying it is easier to become a hypochondriac due to the Internet. (167) Or cyberchondria will kill you. (168) Cyberchondria is misinterpreted as worse than hypochondria since there is a lot of dubious health-related material on the Internet. Online self-diagnosing can result in people spending more money on treatments than needed or that are not even needed. Harvard Medical Systems have tested some online symptom checkers and found the checkers are accurate in 34 % of the time. Half of the time the correct diagnosis was one of the top three options, top 20 in 58 % of the cases. (169)
Dr. Google is probably telling them that they either have cancer or are pregnant, or are pregnant with cancer, because Dr. Google is kind of a hypochondriac.” (170)
In Sweden, the humorist and physician Henrik Widegren wrote a song, “Never Google your symptoms” about patients using Dr. Goolge and the message is: stop. Of course, it is a reaction of frustration because all of a sudden he got patients claiming they had cancer in the throat who did not have it. Usually, about 50 % of his patients have cancer. He was subjected to critique for doing this by other physicians in Sweden. He later explained himself – the song is partly a joke. (171) He also explained Dr. Google as creating a situation that seems a bit awkward – people come to him for a second opinion. The Internet is understood as the best option for a first opinion. He explains it is easier for a physician to find the right and most correct sources on the Internet when it comes to diseases. When patients read about their conditions it is helpful since a physician never really has enough time to explain it thoroughly. Henrik understands the biggest challenge on the layman perspective is to be able to have a neutral mind on findings. He thinks patients should speak up to their physicians if they have been googling because it can help the physician understand what kind of problem a patient might actually have. (172)
Depending on what kind of source or scientific field that is studying cyberchondria the phenomenon is exaggerated or not. For example, searches on a rash can give the idea 59 possible medical causes. (173) A psychological approach says it needs a therapeutically multi-dimensional approach.
“4 – 6 % patients on a patients list are estimated to be hypochondriacs, this figure can rise when the information on the web increases.” (174)
Wouldn’t we all like to know what Woody Allen could be like as an Internet searching for information on symptoms? One study on cyberchondriacs and health anxiety portrays the Internet as enhancing hypochondriac behavior in general. People start by searching for common information and then move on to more rare and serious conditions. People with low levels of health anxiety seem not to have the need to look up health information. People with high levels of health anxiety seemed to get worse by the online health information. The study also concluded there was no difference in the perceived accuracy of health information online. Online health information makes people go for more opinions and doctor shopping. (175)
Online googling can also lead to people changing their diet or supplements where there is no need. This can lead to unhealthy situations. When people are trying too many fixes they turn out not even knowing what is wrong with them. (176)
A Microsoft cyberchondriac study revealed 75 % of Internet information seekers don’t check the source nor the date of what they are reading. People confuse search rankings with the likelihood of a serious disease. “In contrast to the actual prevalence of life-threatening illnesses, the proportion of websites listing them as primary sources is significantly higher”. (177)
Dr. Google in research settings
Academic studies offer a variety of approaches to Dr. Google. Academic studies on health-related information studies portray the public as less able than other generalizing surveys. Some studies have tried to find ways of understanding and promoting patient empowerment thanks to the Internet. Academic studies analyze similar issues as the media and bloggers: too much information, hard to find relevant and up-to-date sources, what sources to trust, the need to filter information, what do we know of health information-seeking behaviors, is the layman literacy level high enough to come to the correct conclusions, the end of paternalism in healthcare, the conflicts, the Internet offers privacy, the quality of the information. Academic studies also raise an imperative for Dr. Google to ask itself: should I stay or should I go?
So far in newspapers, or research or Dr. Google I have not come across comments or studies about gender differences in symptoms and symptom googling. Symptoms of the same disease can differ in men and women. Some conditions also manifest differently in different people. I have only seen brief comments that women misdiagnose themselves seemingly more often than men do. Gender differences so far are on structural or behavioral levels. I have not either found studies or comments showing if physicians listen more to men or women who have used Dr. Google. Women are often disregarded on a gender basis as it is and how is Dr. Google working to level this out? I am lacking more qualitative studies and reactions to Dr. Google in this regard. Does the general vagueness of symptom googling balance it out? The same about differences in typical and atypical symptoms that can vary on different diseases but also in terms of gender. I have not been able to read everything written on Dr. Google so far due to limits of access and I do not know every language that exists. I have either so far found any studies taking a cross-cultural qualitative look on symptom googling on a global outlook to see what dominant hegemony of medical scientific culture is most apparent and how this affects how people in different countries come to understand the disease and if this makes it harder for them to get the right diagnoses or sources. Medical conditions express themselves differently in different countries due to many different factors (more can be found on it in medical anthropology and medical ethnology). Nutrition and culture play big parts in understanding disease and health in different parts of the world. I have to repeat I have not had access to every piece of research on Dr. Google so the following examples should be read from the viewpoint of a selection.
Last year an academic nursing report about patients and Dr. Google in Sweden won the prize as the best academic study. A book reference in this study, Patient.nu explains Swedes use Dr. Google to at least 78 % percent of their health information searches. Swedes do not use the official health info sites. A study has shown the official sites are only used in 8% concerning online health information. The public is increasingly aware of symptoms and diagnoses. The relationship between patients and healthcare professionals has to be modernized. Patients are able to be more up to date with information on diagnoses when it comes to rare diseases and patients can actually help health care to be more updated thanks to Dr. Google. Patients with chronic conditions can manage their care better thanks to Dr. Google because they become generally more aware and can ask more informed questions concerning their treatment options, prognosis, make quicker moves at getting a second opinion. Thanks to Dr. Google, patients know when not to rely on the healthcare professionals they meet. The academic nursing study concludes that health care professionals need better training on how to cope and collaborate better with informed patients.
Dr. Google can be used as a means to understanding how public information on disease and treatment options could be improved or how Google in itself could become better at making it easier for the public as they engage in searching for adequate medical information. For example: “Google should have a doctor’s section” or the need for “search engine purely for medical research”. (178) About 51 % seem to need support when consulting Dr. Google and approximately 48 % seem to need help. This Australian study addresses the fact that healthcare professionals need to acknowledge that Web-based information can be used effectively and it is preferred that healthcare professionals also help patients find relevant information. A “Google-esque” is formulated as a “search engine that only displays medically related health information from reputable sources”. (179) Patients choose to define patient safety differently than healthcare professionals after consulting Dr. Google (eg. female participants were less likely to participate in mammography after being given concise information compared to more detailed information). This still raises the question of what relevant information is. People may deliberately choose not to use the information shown by the medical profession because they know they cannot rely on it and that it is a form of manipulation too. Can Dr. Google sources help create better patient safety thanks to the variety of resources available online?
So far, I have not found any study about patients using medical search engines and how they make them work in comparison to using Dr. Google. The French Survey of Patients and the Web has shown patients use specialized sites. Studies about physicians on the Internet shows they prefer to use a targeted site instead of a search engine to gather medical information. They use edited/secondary data sources as their primary medical retrieving source. Uptodate.com Medscape.com Webmd.com mdconsult.com emedicine.com pubmed.org mercmedicus.com are preferred. 96.7 % say consider targeted sites as being accurate. (180) Physicians use online health information to keep up with the latest research, accessing new information on the disease, information related to specific patient problems, a new therapy or product information. When considering a specific patient problem the searches were about diagnosis or management, sought patient education materials, sought guideline summaries. Male physicians reported being more likely to use the Internet daily than female physicians. The Internet has strengthened the role of the Internet as a self-directed learning device and the importance of the Internet keeps growing for physicians too. (181)
“Researchers at Princess Alexandra Hospital in Brisbane selected a number of difficult diseases to diagnose, six out of ten could be determined by googling symptoms.” (182)
Persons who need help looking for health information on Dr. Google seem to look for more types of health information sites than people who do not need navigational needs. People with navigational needs are less likely to have high eHealth literacy. Web-based health information seeking highlights at least three features: health literacy, eHealth literacy, and patient activation. Dr. Google supports self-management. People with navigation needs seem to act on the acquired health information in comparison to people who do not have navigational needs. The actual behavior and characteristics of Dr. Google on a wider population are still unknown. Patients with at least one chronic disease want to be more informed about their health and consult Dr. Google regularly. (183)
“One has a greater sense of intellectual degradation after an interview with a doctor than from any human experience. #AliceJames” (@ShadesofOurLife, Twitter)
Scientific American has written about a study of how the Internet changes our scope of understanding and perception on how we think or think we think and know anything or how we engage in terms of information. Today we know what we ourselves know and what other people know in ways we have never known before because of the Internet. People have both broader and deeper knowledge due to the Internet. The Internet is taking the place of our external sources of memory and affecting our cognitive faculties. The Internet may not only eliminate the need for a partner with whom we share information “it may also undermine the impulse to ensure that some important, just learned facts get inscribed into our biological memory banks. We call this the Google effect.” The Internet has changed the distinction between the internal and external sense of knowledge. Cognitive self-esteem is higher for people who have just used the Internet. At times people think the knowledge they have produced come from their own capacities, not Google. Using Google has made people think the Internet has become part of their own cognitive toolset. This Inter-mind can bring together the creativity of the human mind with the Internet’s breadth of knowledge to create a better world. (184)
An attempt at a theory of Dr. Google and symptom googling is surfacing. The problem with Dr. Google is explained as that people focus on symptoms rather than having the illness. The idea for making a theory stems from research trying to understand how people perceive having a disease or not: “the base rate (the rate of the disease in the general population), and the case information (eg the description of the symptoms)”. Theoretically, people are psychologically too close to the descriptions. The theory wants to say it is better to be at a distance since it “will prevent symptoms from exerting a disproportionate influence on the diagnosis”. (185)
One study tested what happens if two groups were given different information on a set of symptoms and a control group no information at all on searching for the answer on the web. The purpose of the study was to find out how these groups perceived the medical profession giving the correct diagnosis. Faith in the doctor varied: “In the control group, 81 % of the patients trusted the diagnosis, whilst 90.5 % of those whose ‘research’ had agreed with the doctor did so. However, when the research differed from the diagnosis of the doctor, the trust plummeted to just 61 %, with roughly the same number suggesting they would seek a second opinion”. (186)
Women search the Internet for health information more often than men and the scope of their search is broader than how men proceed on the Internet for the same purpose. Factors that influence online search for health information are: education, gender, race, age, and presence of children in the home, having a poor personal health condition, geographic residence. A lot of the health information is usually: incomplete, outdated, unreliable and unreasonable from a scientific point of view. People search for health information online when they do not understand the information on medical terms provided by their physician. These Internet searches help patients to ask questions concerning their condition, prognosis and treatment options or just to learn about it. Some people tend to find broad knowledge on the Internet confusing since it makes them think they might have more symptoms than they actually are experiencing. Information provided by experts, physicians and sportspersons are regarded as reliable in a Polish study. This Polish study says patients would not question a doctor’s opinion. (188)
A gender study of online health information and the virtual patient-physician relationship in Germany has been conducted. The general conclusions are that women are more engaged than men in using the Internet. Women have a stronger social motive and are easier convinced by health awareness campaigns. Women judge the usefulness gained from the Internet more highly than men. Female patients estimate themselves as being better informed than their physicians and in comparison to male patients. Women use search engines more often, but men use apps more often for health information searching. Women are more reluctant to visit a physician than men. Women understand themselves as being less digitally competent than men. Men are more open to engaging in a virtual relationship with their GP. Men are more interested than women in paying a higher fee for this kind of service. Men can be understood as being delighted in their digital superiority. This does not mean men have a higher degree of digital health literacy. (189)
“You can list your iPhone as your primary care physician.”
A Canadian physician investigates the consequences of how the autocomplete function on Dr. Google shapes the patient experience. How does the autocomplete function prompt patients in their health queries? “How do suggested search terms and subsequent searches influence patient knowledge, beliefs or health-seeking behavior?” The algorithm behind autocomplete is unpublished so it is hard for online searchers to predict how to autocomplete works; “what is clear is that autocomplete could be a double-edged sword”. Autocomplete might be suggesting incorrect information. An example of the power of suggestion is that using the autocomplete function can redirect users in the complete opposite direction of their concern or end with information – being directed to dangers of treatments instead of side-effects? The physician tried the following: “A quick screenshot and tweet to Google with the simple question, ‘Are you fueling the anti-vaccine movement via autocomplete?’ got results: a repeated search a few hours later showed that safety with vaccines was no longer being autocompleted to dangers”. (190)
”It is as if the Internet is the solution to all our problems – was once predicted. “But it will not solve all our problems. /…/ Development means that we can approach certain problems in a dramatic way, but to balance this we will have to confront a whole raft of new problems. /…/Change of this type is not instantaneous. /…/ Every revolutionary technology only reveals its true colors after an unavoided period of incubation.” (Alexander Bard & Jan Söderqvist)
One study attempted to see if it is possible to reduce the negative effects of biased information on people’s vaccination-relation attitudes and attitudes. The aim was to try to manipulate the content of Google’s knowledge graph box. Cognitive biases understood as systematic errors in judgment and decision-making was of interest. Clinicians experience cognitive biases such as anchoring, exposure or other bias during online information search. Searchers usually have a positive hypothesis when starting a search and try to stick to it. Conclusions reveal the knowledge graph box positively affects searchers knowledge and attitudes. A small change in the content used by Google can make a valuable difference in the pursuit of unbiased searching. (191)
A paternalistic Australian study introduces the concept “co-destruction” due to the misuse of online health information. The self-diagnosis process is looked down on. This study has a consumer and service approach to Googling symptoms. The co-destruction value presented argues that it is impossible for everybody does not have the same ability to self-diagnose with online health information, the real implications of self-diagnosis are still not properly understood, and the public is not equipped to evaluate evidence-based medical research. Australian doctors have labeled “doctor in the mouse” as alarming. Misinformed health consumers can influence healthcare professionals’ diagnoses, adopting inappropriate treatments, waste money, worry about illness where there is no concern. The self-diagnosing is disputed: “will the expectations of consumers differ if they are using online self-diagnosis services because they cannot afford a visit to a doctor compared to consumers who are embarrassed to discuss issues with a doctor?” The study explains that only more educated health consumers can engage with health professionals and actively participate in their own care, thereby making the process more effective and efficient. The study proposes e-health literacy should become a government priority. (192)
“In mature information societies: Those who control the questions shape the answers. And those who shape the answers control reality.” (Luciano Floridi, shared on Linkedin)
A Spanish study on Dr. Google portrays the picture of the doctor-patient relationship and explain how Dr. Google challenges the doctor’s authority and that a patient would never admit to having consulted the Internet. The principal source of health information is the healthcare professional – 88 % and the Internet is used by 50 % for these reasons. Providing patients with correct information on their condition is understood as positive because it can improve their compliance with treatment. Unfortunately, this is not the case because not all health-related information is valid on the Internet. (193)
Another Spanish study looked at the aging population and Dr. Google. By 2050, Spain will have the third oldest population in the world after Japan and Korea. The problem with this study is that it studies an older current population. The older population of 2050 is a different generation who are used to the Internet and digitalization. The conclusions in this study can be regarded as false in terms of how to think in the future. Knowledge of how people age in literacy and how to make the Internet user-friendly for older people is actually more of interest.
Online health information is helping the aging population take better responsibility for their health and promotes healthy living. The challenges concern obstacles to understanding and accessing online health information, the lack of e-health literacy of the older population. Several do not even use the Internet because they are afraid of it or do not want to become absorbed by it. Some even think takes away their freedom because all engagement is obliging. Many already know they find out more on the Internet than by consulting a physician. Finding non-traditional medicine on the Internet is seen as beneficial. On the other hand, wanting to find health information on the Internet can “turn your life into an illness”. Many do not want to spend time on a computer at all. The general conclusion is still that the Internet is empowering to the aging population. (194)
“The Internet can’t write me a prescription or look in my ear, why would I tell my doctor what I read online? /…/ My doctor doesn’t want to hear about that, he wants to take some tests and check on my prescriptions.”
A Canadian study of patients 50 years and older wanted to understand how an older population felt about using the Internet for online health information and if they talked about it with their healthcare provider or not or problems related to it. The conclusions of this study exposed the participants’ own ability, anxiety and embarrassment on sharing thoughts concerning online health-information, forgetting to bring it up, believe there is no need to bring it up, concerns the doctor does not want to hear about it, hiding concerns on non-physical harm. Initiatives that can encourage a more open climate: having a family member present, doctor initiated inquiries, encountering an advertisement that suggests talking with a doctor about it. (195)
“I’m embarrassed to admit it but my favorite website is this one that sells things. I’d really like to understand how certain foods affect my prescriptions. But if I started to talk about this website, I think they would think I was out to lunch. Or obsessed with food. I’m not going to bring it up. I don’t get most of it anyway.”
Having access to one’s personal health record, or electronic health record (EHR) together with Dr. Google can be understood as a patient safety measure. To read one’s EHR and meet Dr. Google can enhance e-health literacy and literacy in general and patients’ comprehension of their diagnosis and the prognosis. Many patients encounter communication problems with healthcare professionals who do not think of explaining things correctly in plain language. Usually, physicians are concerned patients will not understand the medical jargon, but all these words and concepts can be googled. Nursing science usually has a more patient-friendly approach to when patients read their medical records and use the Internet to enhance their scope and become more empowered patients. One study investigated an example where a patient was diagnosed with cancer but the patient did not even understand this at first. The patient calls his wife and the wife consults Dr. Googe and the EHR. The wording in the medical record is not in a normal use of language. The medical record displays the word little concerning a tumor. The patient is at first relieved. His wife searches the wording on Google in the medical record and learns something different: “and she does a Google search on the quotation only to find out that her first guess was completely wrong. In this context, ‘little’ refers to the degree of the tumor’s differentiation and describes how much it resembles healthy tissue. A ‘little differentiated’ type of cancer is more aggressive than a medium of highly differentiated cancer”. (196)
Dr. Google is not seen as a reliable source for asking if one should take the HPV vaccine or not. The Google algorithms lead to poorly grounded opinions and statements. The information is not specialized enough from a scientific point of view. These circumstances may influence perception and decision-making. This examined a total of 140 search results, 45 different websites. Out of the total of 45 websites, 53.7 % appeared once, 27.8 % appeared through 2 different searches and 18.6 % appeared three times or more. Most of these websites, 88.9 %, were targeted at the public, 9.3 % aimed at women and 1.9 % aimed at health professionals. There seems to be some kind of limitation in Google’s gender distinction tool. Searches were done through questions instead of statements. “This was possible due to a match between questions and a more informal use of language and the presence of dialog in blog/forums and videos.” This article states: “understanding the background of the codified searches, page priority rank and the ‘democratic philosophy’ functioning pillars, offers the key to maximizing this sophisticated tool and being able to lead individualized and more accurate searches”. Google maybe does not provide the information one needs, but rather the information one would like to find. The recommendation is that since Google is not specialized in medical information, a healthcare-specific search engine should be created instead. (197)
The most dramatic development in medical decision-making is the Internet. Heuristics help generate accurate decision making in an economical manner. Heuristics are also associated to lead to specific patterns of error in clinical decision-making. Google is an algorithmic manner that gives the impression of offering meaningful information. Googling is better for rare diseases than ones that are more common. This study finds that this kind of technology may increase the diagnostic performance of a novice to intermediate level in medicine. The most important part is the thinking process. (198)
- An American study of patients with inflammatory bowel disease and Dr. Google showed 91 % searched the Internet. 82 % took the medication prescribed by their doctor. (199)
People use Dr. Goolge because it is getting harder to get access to medical professionals. A study asks if Googling can help promote public health. Currently, there is no advanced research on how self-diagnosis is beneficial for proactive health behaviors. People are more dependent on their human condition and social relations for proactive behavior. Circumstances vary across populations. Patient Associations express concerns against self-diagnosis because information on the Internet is not reliable and often outdated. Self-diagnosis is recognized as a good way for disease perception and experience of emerging disease. (200)
“Just to look for information that my doctor wasn’t able to tell me… They didn’t know what the cause was. So I was really adamant to find out what the possible cause would be.”
Dr. Google has been tried out to see how it enhances medical responses on patients in India. Google search improved the mean score of correct answers from 47 % to 62 %. The tool itself is reliable but the information is incomplete and unreliable. (201) A Chinese usability study has shown that 50 Google hits often help lay users, but the most useful information might be found beyond 200 hits on Dr. Google. It is most unlikely that people pursue beyond hit nr 100. Even clinicians are using Dr. Google for diagnosing patients. (202) One other study tried to understand the use of the most preferred language and translation when Googling online health information from 227 different countries. 7- 10 % are English or French. The US online Hispanic population search for information to a lesser degree in Spanish than English. English speaking Ghana has a high frequency of French searches, German and some Dutch. High rates of non-colonial language searches using Google may reflect the fact that health professionals trained in other nation’s languages are expected to have better access to the Internet than the general population. A single linguistic accent or special character in searches can alter the number and content of health-related information on Google. In Sub-Sahara, unexpectedly high search rated in non-colonial European languages was found. In Latin America, indigenous words were used rather than colonial Spanish. Brazil uses mostly Portuguese. Turks use Turkish. In Bangladesh, people seem to use the language as work immigrants instead of the local language. The world’s people seem to be searching in their mother tongue and local languages, not in English. “Previous online translations by the WHO and FAQ have no doubt been worthwhile.” Cross-language search retrieval shows what needs to be improved. Such efforts can help reduce the linguistic digital divide. 80 % to 90 % of health- & food-related institutions do not translate their websites into multiple languages, even when this information concerns pandemic diseases. (203)
Conclusion on Holland and Dr. Google say the Internet is the number one source for health-related information: 82.7 %. More than one-third of the Dutch population uses Dr. Google. Side-effects of treatments, 62.5 %, and symptoms, 59.7 % are the most common searches. There is a need for a better understanding of the eHealth status of the Dutch population. What are the obstacles? Technological features, poor coordination, knowing the personal characteristics of the intended usage. The Internet has an at least 10 % higher popularity degree than physicians as a source for health-related information, 82.7 %, and 71.1 % respectively. Higher educated people consult their family and friends more often. Patient leaflets are the least popular information source. 92 % of the Dutch population searches for online health information at least one time a year. (204)
“Client: According to google, your diagnosis is wrong so I want my money back… #vettech #drgoogle #google #ignorance” (@HonestVetTech, Twitter)
Patient perspectives reveal they usually find it easy to find information of high quality. Reliability is questioned. People who see themselves as proactive in seeking health information consider themselves excellent at appraising sites. If people took the information to the physician, it depended on relevance. Few scheduled a visit just to discuss information. Those who did take the information to the physician did so just to get the physician’s opinion of the information with no specific need or asking about tests or to change medication. Patients with high self-esteem are more likely to ask the physician to do something specific from the information. Patients feel hurried during the consultation – there is not enough time to discuss. 30 % said the relationship improved when they brought information. 66 % remained the same. 4 % of the relationship worsened. 12 % sought a second opinion from the same information. 4 % changed physician. 1 % changed health plan. 49 % witnessed serious dissatisfaction concerning physicians’ communication skills about information. People do not use sites for health information, they use search engines. (205)
“In general terms, I start off with Google and see where that takes me.”
Physicians using Dr. Google to find available sources from PubMed and Google Scholar have been studied. A comparative study explains bibliographic resources require paid subscriptions – this limits their own access to the current best evidence. It is hard for physicians to develop efficient search strategies. Examples with nephrologists were tried to see how they could manage with PubMed and Google Scholar. The two most prominent metrics of searching are recall and precision. 80 % of nephrologists do not review beyond 40 search results. 90 % use Pub Med. 40 % use Google Scholar. Google Scholar retrieved twice as many articles as PubMed. PubMed provides greater access to free full-texts. Google Scholar demonstrated better recall and similar precision in 77 % of searches. Problem: 80 % of relevant articles were not retrieved by either source. (206)
- ”The art of medicine relies on the physician’s ability to put the data together for a diagnosis. It doesn’t mean that websites can just make up facts and present them as evidence.” (207)
A comparative study of search engines for health and medical information has been made about: Google, Yahoo, Bing, and Ask.com. Breast cancer was used as an example. The 200 first searches were saved from the different search engines. Google has the best search validity followed by Bing, Ask.com, and Yahoo. Each search engine emphasized various types of content differently. Bing scored highest for user satisfaction analysis, followed by Yahoo, Google, and Ask.com. The study concludes there is room for improvement to help users get more accurate and useful content. (208)
“I’d love to have a search function that can say: I want to hear about blah and blah, but not blah.”
Another comparative study involving Google wanted to find out to understand what digital source is most corresponds to the Centers for Disease Control and Prevention. Data were retrieved from CDC, Google Flu trends, Health Tweets and Wikipedia for 2012 – 2015 flu seasons. A 92 % higher sensitivity was found for Google where the positive predictive value, PPV, for Google was 83 %. Twitter had a low sensitivity of 50 % and PPV of 43 %. Wikipedia had the lowest sensitivity at 33 % and PPV at 40 %. (209) One study took a closer look at the accuracy of Wikipedia compared to peer-reviewed sources. Most of the Wikipedia articles on the 10 most costly medical conditions in the USA contain many errors. (210) Wikipedia has a list of different medical wikis, some can be edited by anyone and professionals edit some. The list in August 2017 shows: AskDrWiki, EyeWiki, Hemonc.org, Radiopaediea, Wikidoc, WikiEM, WikiLectures, Defunct, Medcyclopaedia, Medpedia, and Wikisurgery. At this point, I have not checked studies concerning these sites. I have checked WikiDoc on occasion and WikiDoc uses Google Answers – the latter does not update anymore. There is a shortage on WikiDoc. Wikipedia has been subjected to cultural bias and there are a number of alternatives that are professionally checked before any information is admitted: Scholarpedia, Citizendium, Encyclopedia Britannica Online, MSM Encarta, Infoplease, Conservapedia, Uncyclopedia. I have currently not looked up research concerning the other sites that are named. (211)
One Canadian study evaluated medical students on the Internet. During the course of medical education, students primarily rely on medical literature. In their daily routine, they rely instead heavily on non-traditional tools and evidence-based medical summaries. Google was used daily, followed by Wikipedia, personal notes, Up-To-Date and different bibliographic databases. Google was most appreciated for accessibility, usefulness, and ease of understanding. Wikipedia was most appreciated for accessibility, ease of understanding and usefulness. EBM resources were not appreciated for accessibility, accuracy, ease of understanding, trustworthiness, and usefulness. PubMed was most appreciated for accuracy and trustworthiness. (212)
The British Medical Journal has examined how Google Trends can be useful for cancer screening. Google Trends can be useful to identify new interests in cancer screening or related aspects. Google Trends can help policymakers of the benefits or the direction of new communication campaigns. The problem with Google Trend is that it focuses on selected metropolitan areas. Knowledge of rural areas is limited. The strength of Google Trends on cancer screening is that it provides data in the public’s interest. Google Trends does not help give any answers to cancer screening usage data. (213)
A systematic review of Google trends for healthcare researchers and the problem with Google Trends in research settings is the lack of transparency and the range of applications and methods employed have not been reviewed. The geospatial and temporal data Google Trends aims to study causal inference, description, and surveillance. The categories are easily biased. Causal inference focuses hypothesized relationships with Google Trends data, for example, the potential link between a public figure’s cancer diagnosis and population interest in prevention. Descriptive studies describe geographic trends and general relationships. Surveillance studies aim to evaluate Google Trends to predict or monitor real-world phenomena. A typical problem is the replicability and clarity of search inputs on Google Trends. Different selections of terms to address a common question with Google Trends can produce disparate results and conclusions. Researchers should try to strive to make the raw data they downloaded available online. (214)
An American study on osteopathic primary care about the impact of online health information and behaviors and the patient-physician relationship reports that half of the respondents have changed the way they think about their health. Findings: online health information reduces physician influence, websites offer unregulated advice that contradicts standard medical procedures, making more self-directed dietary changes, following physician’s advice more closely, the majority were able to find answers to their healthcare questions online, increased interest in their health, increased physician visits, increased use of herbal products or dietary supplements, some felt uncomfortable using the Internet for health information, asking more questions during physician visits, increased levels of patient compliance, online health information has a reassuring effect and reduced confusion, the majority shared their search results with their physicians. (216)
One study tried to pinpoint the nature of the relationship between informed patients and the patient-physician relationship. Because of the Internet, patients are expected to be more active and engaged in decision-making. The conclusions of the study say it all depends on the prior relationship if patients start to discuss or share findings on the Internet with their healthcare provider. Patients were found to have certain kinds of behaviors concerning their googling: asking additional questions, making suggestions on their findings, directly disclosing findings, bringing printouts. Usually, patients use online information to better understand their doctors’ recommendations. Physicians tend to deliberately assure their own authority to make it harder for patients to be active in decision-making processes. Physicians would deliberately only answer briefly to reclaim the traditional consultation model of one-way communication. There were also bright moments, some patients perceived that when they discussed their findings the relationship with their physician improved. Conflicts were also reported about how the patient and physician had different interpretations of the information a patient brought along to a consultation. When patients value the information they find on the Internet above their physicians’ they ignore physician’s expertise. The communication strategies healthcare providers have to change to facilitate a more open climate on a general level. This can be seen as a patient safety measure. (217)
“I don’t put a great deal of trust into it. How do you weigh the worth against the other when it’s not your field?”
People with poorer health were less likely to start using the Internet. Health status was not related to the self-reported usefulness of the Internet. The majority of those with poor health would talk to physicians about the findings. Less than a third with higher health status would. People with poorer health are more likely to combine information seeking with their health care experience. The effectiveness of search engines is limited. Only 20 % of top links seem relevant to patients. Physicians should be educated about Internet-based health information so they may better instruct patients. Public health workers and eHealth developers should work together to educate patients about searching for health information. (218)
Social media in adolescent groups for health literacy is overlooked. Facebook and Youtube may be efficient for audio-visual material to promote digital oral health literacy. (219)
A qualitative study has shown the difference in behavior between men and women and how they interact about online health information. Women prefer discussion groups. Men prefer to read newspapers for information. Educational background does not influence if one goes on the Internet or not. Everybody does. Highly educated people have fewer barriers to understanding medical information and should not be considered a very high barrier. Health portals are not of interest. (220)
A study on the Flemish population concludes the use of Dr. Google promotes a better relationship between patient and physician when it comes to GPs. When the patient has googled before consultation new symptoms are usually not discovered. Dr. Goole is understood as a constructive tool that makes it easier for patient and physician to reach a mutual understanding of symptoms and diagnosis. At the same time, the study could not say if Dr. Google helped increase confidence in the GP – probably it decreases it. The more people use Dr. Google the more they seem to gain confidence and took medication without advice. The study does not say if it this concerns traditional or complementary treatment options. GPs conclude patients will not self-medicate if the symptoms seem very serious. “GPs unanimously agreed to the argument that the Internet search does not affect the severity of symptoms”. This corresponds to findings of the idea of that cyberchondria is exaggerated: “More than 80 % of respondents experienced no difference in the severity of symptoms after the online information search” and “online search usually did not make people more worried about symptoms”. Only 17 % experienced additional symptoms after symptom googling. (221)
Cyberchondria is understood to affect socially anxious persons. Socially anxious persons can have a greater need for social control where the negative expectations of face-to-face enhance the use of Dr. Google. Online information in comparison feels safer since it also decreases the risk of negative evaluation. (222) One can also rephrase the question: what other problematic traits make people choose the Internet instead of IRL medical consultations? Shyness and aggression are highlighted. Depression and social withdrawal and low esteem enhance the use of the Internet. Narcissism, loneliness, and self-perception does not make any difference. (this study on the other hand only had these keywords). (223)
A comparison of physicians versus computer diagnosis – symptom checkers (published in JAMA Internal Medicine). Physicians listed the correct diagnosis in 72.1 % vs. symptom checkers who were right in 34 % of the cases. Physicians outperformed computer algorithms with 84.3 % versus algorithm at 51.2 % accuracy. (224) The symptom checkers are good at picking up on more or less common and less serious diagnoses. “But in reality, doctors use the digital age often consult evidence-based websites (e.g. up-todate.com) when faced with a complicated set of signs and symptoms, and use mobile apps developed by such sites that offer a broad differential diagnosis coupled with online links and studies.” Physicians provide an incorrect diagnosis in at least 15 % according to this study. (225)
This End
I cannot say “The End”. This mosaic is only one way of looking at Dr. Google. Dr. Google is still in a developmental phase. What will come next? In the close future? Further on?
This has been done in the month of August and according to a Google intern, that is the happiest month in the United States. It does not have to be so in the rest of the world. The article about the findings by the Google intern was shared with my Twitter network and the response was more questions: When there are big, relevant differences between big science and big data, whom would you turn to?
I highly recommend you to read the references in full length to get a bigger picture than I have been able to compose in this text. From my experience, when I start to read a text with available links on it, this gets me going in new directions on additional sources. One first has to find a gatekeeper – or more precisely – a gate shower – skip the gate word – a door opener – a passenger onto new knowledge… enjoy your upcoming ride if you decide to embark.
©Philippa Göranson, Lund, Sweden, August 2017
The story on Dr. Google is a big quest with no end. In June 2019 it has been reported Google is making it harder to find accurate health information about natural health and health freedom. Read more about what Greenmedinfo has to say about this problem, ”Google just scrubbed natural health websites from its search results, whistleblower explains how and why”.
This attempt has been transformed into a brief by Humanities Watch: ”Internet Rx: do doctors and patients know how to read advice on-line? (Philippa Göranson, Pulse)”. Humanities Watch is about finding the Humanities’ Voice by promoting the conversation between the humanities, business, healthcare, science, and technology. Twitter: @HumanitiesWatch
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- Kreimer, Susan, 2015
- Creag, Sunanda, 2011
- de Bronkart, Dave, 2009
- Peratt, Börje, 2017
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- Oranim, Rachel, XXXX
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- Lyons, Jodi, XXXX
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- Cucinotta, Jim, 2017
- The University of Manchester, 2015
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- Walsh, Bryan, 2014
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- mhealthinsight, 2015
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- Margolis, Jacob, 2017
- Wikipedia, August 2017
- Central.de, XXXX
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- Clark, Justin, 2017
- Google Trends, 2017
- Stop Dr Google, 2015
- Le Quotidien Santé, 2015
- Central.de, XXXX
- Bayer, Florian, 2015
- Hsu, Christine, 2012
- Bell, Jennifer, 2013
- IrishExaminer, 2017
- Chilton-Towle, 2017
- economìaDigital, 2017
- Basile, Matteo, 2016
- Sheridan, Kate, 2017
- Dala, Amy G., 2015
- Howard, Jacqueline, 2016
- Fredholm, Lotta, 2009
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- Unterberger, Tanja, 2015
- StopDrGoogle, 2015
- de Bronkart, Dave, 2016
- European Commission, 2017
- Google Trends, 2017
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- Doctor Schnabel, 2016
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Inom patientmakthorisonten finns begreppsbildningen patientinflytande. Inflytande är inte lika farligt som makt. Inflytande handlar om möjligheten att påverka. Det behöver aldrig betyda att det verkligen är något patienten verkligen har, gör, eller får göra/utöva.
Patientmakt 