Info-pollution: a word of caution for the neurosurgical community
Egyptian Journal of Neurosurgery volume 37, Article number: 40 (2022)
The medical-patient relationship is facing pollution of information all over the internet, for physician and patients is becoming tougher to keep updated with the highest quality of information. During the last 20 years multiple evaluation tools have been developed trying to find the best tool to assess high-quality information, to date DISCERN tool represents the most widely spread. Information can be found on the surface internet and in the deep web, constituting the biggest chunk of the internet, informing and controlling the quality of information is a formidable task. PubMed and Google Scholar are the most important tools for a physician to find information, although multiple others are available; awareness must be raised over improving current strategies for data mining high-quality information for the patients and the healthcare community.
Providing a piece of adequate and correct information to patients is a fundamental practice in medicine and neurosurgery. Among the sources of information used by patients are asking the acquaintances, relatives and health workers. With the advent of new technologies, patients are increasingly exposed to thousands of web pages evidence by the increase in web with more than 3.8 billion users as of 2017 , this issue has already been of concern as a new consumer health informatics framework  and particularly in neurosurgery and general medicine [3,4,5,6,7].
Atci et al.  report that 66% of the patients who underwent lumbar disk surgery had searched internet for related information on the lumbar spine surgeries; in the same study; the group that carried out more search on their condition were university graduates (100%), while secondary school graduates (88.2%) and primary school was (18.7%). When it comes to medical information, patients mostly use patient information leaflets, followed by doctors, pharmacists, television, newspapers, magazines, drug advertisements, nurses, and the internet .
The Internet contains a lot of inaccurate information [5, 10,11,12,13,14,15,16], it is widespread, easy to use and offers a load of information, Google being the most popular search engine focuses in the amount of information, rather than in the quality of information. The quality of information is rather assessed by scientific journals; each one of them is directed to a specific community, scientists, and clinicians, in the matter of basic science research, translational research or clinical practice. Web blogs are also available without any kind of quality regulations, all this due to globalization and free speech we joy nowadays, although powerful, this leads to the question, How to manage all this information and digested into what we practice? Subtracting high-quality information is a delicate process for professionals and not an easy one for patients.
Multiple sources of information are available and many ways to assess the quality of information are already standardized, we present an overview into what information pollution represents and what can we do about it to develop better research and clinical care. In that way, we shed light on the wrong concepts as well as information that may mislead our patients and their legal guardians.
Available tools to discern the quality of information
Nuffield Department of Population Health in Oxford University in 2004 in the UK funded by National Health Service developed DISCERN, a tool designed to help individual consumers about treatment choices, health information providers, authors and producers of written health information and a training tool for health professionals to judge the quality of health information . DISCERN was originally developed by asking an expert panel to analyze consumer health information about treatment options in myocardial infarction, endometriosis, and chronic fatigue syndrome and after a pilot study with their drafted instrument using a national sample was performed. This tool covers a wide range of the population from patients to researchers, by applying a brief questionnaire made of 16 questions classified into three sections, using a Likert scale.
Since it was created, multiple articles have been published on the matter of assessment of the quality of information by using DISCERN tool in regard to vestibular schwannoma , pituitary adenoma , vagus nerve stimulation , perianal surgery for Chron’s fistula , swallowing disorders , radiological related information , renal diet information , patient information , maxillofacial trauma , sickle cell disease , male infertility , Human Immunodeficiency Virus , ontological information , chest pain , craniosynostosis , heart failure , robotic prostatectomy , breast cancer [35,36,37], thumb sucking habit , prostate cancer [39, 40], cochlear implantation , Down syndrome screening , congenital heart defects , pelvic organ prolapse , childhood epilepsy , autism , bariatric surgery , diabetes mellitus [48, 49], clubfoot , attention-deficit/hyperactivity disorder (ADHD) , idiopathic scoliosis , chronic pain [52, 53], colorectal cancer , metabolic syndrome , cervical spine surgery , osteosarcoma , dengue , chemotherapy , aromatase inhibitors , alcohol dependence , juvenile idiopathic arthritis , head and neck oncology , neuro-oncology [4, 64, 65], familial adenomatous polyposis , obsessive convulsive disorder , osteoarthritis . As evident very few have been evaluated in the Neurosurgery related areas. See Table 1.
JAMA benchmark criteria
The JAMA benchmark criteria were developed in 1977 to aid in the discrimination of information on the internet [7, 69], more specifically for the American Medical Association (AMA) websites and visitors to these sites, but these criteria can be used for other providers. These criteria have been used for otitis media , breast cancer , overactive bladder , preoperative fasting information , scaphoid fractures , oral leukoplakia , adult kidney cancer , robotic prostatectomy , prostate cancer , gynecologic cancer , discectomy , rotator cuff tears , head and neck cancer , oral ulcers , Perthes disease , temporomandibular disorders , hydrocele , scoliosis , post-herpetic neuralgia , among other disorders.
Health on the Net (HONcode)
Health on the Net Foundation located in Geneva, Switzerland, is the oldest code for medical and health information on the Internet, used by 7300 certified websites and more than 10 million pages in 102 countries, it is a not-for-profit organization, funded by the Geneva Ministry of Health and the State of Geneva launched in 1996 [16, 87], targeting the general public, the health professionals, and the web publisher, by actively involving the site owner in the process of certification, it defines a set of rules only intended to hold Web site developers to basic ethical standards in the presentation of information and help make sure readers always know the source and the purpose of the data they are reading.
This certification is accomplished by the following eight principles: giving qualifications of authors, information is for support not replacement, sources and dates are cited, justification of claims, providing contact details, financial disclosure, and clearly distinguishing advertising from editorial content.
Most other initiatives have been intended as a code of conduct, the three formerly mentioned are the most widely used for evaluation of quality of information on the internet, while a lot of initiatives like: eHealth Code of Ethics, Health Internet Ethics (Hi-Ethics), URAC Health Web Site Accreditation Program, MedPICS Certification and Rating of Trustworthy and Assessed Health Information on the Net (MedCERTAIN), TNO Quality Medical Information and Communication (QMIC), EC (European Community) Quality Criteria for Health-related Websites, Organizing Medical Networked Information (OMNI), British Healthcare Internet Association (BHIA): Quality Standards for Medical Publishing on the Web, The Health Summit Working Group-Criteria for Assessing the Quality of Health Information on the Internet: IQ Tool (HSWG IQ Tool), The International Federation of Pharmaceutical Manufacturers Associations (IFPMA) Code of Marketing have been founded, none is extensively used, discectomy-specific content score [78, 88]
A limitation for a successful choice of information is that anyone can create a website and post information that the website owner believes is relevant and no regulations are available to keep track of information quality. It is probably a herculean task to try to count every single non-scientific article published in a neurosurgery related area. We will spread our analysis in two: Surface web and deep web.
The surface web is the part of the internet we can easily search with common metadata engines, it is also called the indexed web and contains at least 4.5 billion pages as of November 2017 , as estimated by Van Den Bosch at al. methods , through a 9-year longitudinal study based on what is indexed in Google and Bing.
Since it is impossible to index every single content on the web into a search engine it leaves us with an important amount of information that is not easily available except for people with experience in navigating through non-conventional ways. Very few research is written in this context, Bergman in 2001 revealed that public information on the deep Web was 400–550 times larger than World Wide Web (WWW), with 7500 terabytes of information compared to 19 terabytes on the surface Web with quality content 1000–2000 greater . Explaining how to use the deep web would require a completely different article due to the extent of tools involved, therefore we are concentrating on the surface web .
Web tools in the surface web
Medical trainees use multiple medical resources to fasten their learning, frequently used for clinical decision and medication queries. A study published by Egle et al. found that when entering a set of clinical queries into these resources, the highest percentage of correct answers were found in Up-to-date and Epocrates with Google having the lowest percentage of wrong answers.
The amount of index articles is growing unprecedentedly, during the last years at a double-exponential pace. Each year there is an increase of ~3.1 new entries in MEDLINE , with 26,759,399 citations found up to November 2017 including data from Index Medicus with citations since 1946. Pubmed is a comprehensive, up-to-date and open-access search engine, but finding a relevant citation to our personal needs is becoming more and more challenging due to the increase in the literature. PubMed has developed throughout the year's search strategies that empower users to get the most accurate information based on their queries, in 2009, when 8 million fewer citations were available, one-third of queries returned from 1 to 20 citations and 6% were > 10,000 citations .
Google Scholar is growing at an impressive rate and nowadays it could be probably the most important option when looking for information somewhere besides PubMed [95, 96], when contrasted with PubMed, they both use Boolean terms, search limits, spell checking for search terms, linking to institutions, citation managing, track the number of times articles are cited by other publications, email alerts for prespecified searches and allow users to view related articles. Google Scholar does have the advantage of when searching, it automatically searches for the full-text of the publication, but does not have search filters, truncation, controlled vocabulary or search history storing . Google Scholar does provide access to free-full test articles to a higher extent than PubMed and this is especially relevant for a physician who works independently and does not have access to institutions that pay the fees to grant access to these articles, limiting the usability of information and consequent research mainly in developing countries.
Additional 28 tools are comparable to the PubMed system as published by Lu . RefMed, Quertle, MedLineRanker, MiSearch, Hakia, SemanticMEDLINE, MScanner, eTBLAST, PubFocus, Twease, Anne O’ Tate, McSyBi, GoPubMed, ClusterMed, XplorMed, MedEvi, EBIMED, CiteXplore, MEDIE, PubNet, PubMed, PubGet, BabelMeSH, HubMed, askMEDLINE, SLIM, PICO and PubCrawler with novel proposals for searching, results analysis and interface/usability.
Given the review nature of our article, there is missing comparison between the different common internet and other search tools including progress all over the years, rules, degree of accuracy, and percentage of inaccurate information. We are planning to conduct primary research to include such data.
Finally, the info-pollution is here and it comes to stay. Neurosurgeons should be alert to the fact that disinformation is affecting the doctor–patient relationship and our efforts must be doubled to ensure that our patients receive the maximum reasonable information about their illness. Neurosurgeons must inform their patients in detail everything about their illness including surgical approaches, results, complications and prognosis in accordance to law, ethics, and patients' rights.
We must keep in constant evolution in the way we obtain our information.
Availability of data and materials
Will be available upon request.
British Healthcare Internet Association
Health Internet Ethics
International Federation of Pharmaceutical Manufacturers Associations
Certification and Rating of Trustworthy and Assessed Health Information on the Net
Organizing Medical Networked Information
Quality Medical Information and Communication
World Wide Web
Internet World Stats. World Internet Users Statistics and 2017 World Population Stats n.d. http://www.internetworldstats.com/stats.htm. Accessed 23 Nov 2017
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Narvaez-Rojas, A., Arnaout, M.M., Hoz, S.S. et al. Info-pollution: a word of caution for the neurosurgical community. Egypt J Neurosurg 37, 40 (2022). https://doi.org/10.1186/s41984-022-00179-5