9 minute read
The e-informed patient
Dr. Markos Karavitakis Member EAU Patient Information Working Group Assoc. Member EAU Guidelines Office Athens (GR) markoskaravitakis@ yahoo.gr
Dr. Gerasimos Alivizatos President of the Hellenic Urological Association Athens (GR)
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gali@outlook.com.gr
Dr. Andreas Skolarikos Prof. of Urology, University of Athens President Professional and Scientific Services, HUA Athens (GR)
andskol@yahoo.com
Informing a patient about their medical problem and the way they could be treated was, is, and will forever be a sacred obligation to the attending physician1. For many decades, the rules of bioethics have required the development of "autonomy" of the patient, i.e. the right of the patient to be informed about their condition and to decide on their treatment after having received correct and thorough information and after any questions have been answered2 .
Very early in its discovery and its widespread use by the public worldwide, the internet began to be a source of medical information for the patient. For the past twenty years, patients and the general public have had access to a huge amount of information3, which they consult extremely often3-6 .
The rapid expansion of the use of the web and of the health information derived here has been termed the e-patient revolution6. In addition, in our era patients can easily find information on television, in print, and in online magazines.
The bibliography at the end of this article indicates that patients use this information rather correctly. The majority of patients claim that the information they find on the internet, even in cases of malignancy, helps them make a decision about their treatment and strengthens their relationship with the doctor. Most patients who search for information on the internet do not try to replace their doctor, since the search for this information is done, most of the time, after they have first contacted the specialist. They aim to confirm the information received from the specialist and to search for additional information to answer some of their questions3,7. Also, the information patients acquire on the internet does not seem to increase their anxiety and stress about their health problem8 .
Conversely, many physicians consider the internet to be damaging to their traditional role as a medical authority8 and consider it to be a serious waste of time to explain the information gathered from the internet to the patient9. Simultaneously, they believe that patients are misinformed on the internet, which often leads to wrong decisions and requirements10 . Furthermore, it is shown that in some occasions an increasingly large number of potential patients are utilising Direct-to-Consumer (DTC), internet-based prescribing platforms for the diagnosis and treatment of diseases that do not require physical exams11 .
Online misinformation We believe that the growing use of the internet has implications for people seeking information on health matters. The internet can be helpful for patient-physician communication, but this depends on the quality of health information found and whether the information is discussed during the medical visits12. We also believe that there is indeed online misinformation in the medical field, a problem that is part of the era of “fake news” in which intentional or unintentional misinformation spreads rapidly, a fact that has worsened during the Covid-19 period10,13 .
A recent study revealed that online health information on prostate cancer (PCa) lacks concordance to current guidelines. Certified websites or websites created by medical experts showed a significantly higher quality and accordance with guidelines14. Many popular YouTube videos about prostate cancer contained biased or poor-quality information. A greater number of views and thumbs up on YouTube does not mean that the information is trustworthy15. Media coverage on and marketing of robot-assisted radical prostatectomy (RARP) on the internet is more widespread compared to laparoscopic prostatectomy (LP) and open radical prostatectomy (ORP). Disturbingly, the quality of websites featuring any technique for prostatectomy was of poor quality while these websites claimed to present honest information, and this finding needs to be discussed when obtaining informed consent from patients16. Most videos on the surgical treatment of LUTS/benign prostatic hyperplasia (BPH) on YouTube had a low quality of content, provided misinformation, were subject to commercial bias and did not report on conflicts of interest. These findings emphasise the importance of thorough doctor-patient communication and active recommendation of unbiased patient education materials17 .
There are countless examples of misleading information on the internet in our specialty. This means that we should do better. Even large associations release information difficult to comprehend. Currently available online InternetBased Patient Education Materials (IPEMs) pertaining to benign prostatic hyperplasia treatment options are written at a level that is too difficult for the average patient to understand. Physicians and health networks should take the United States Department of Health and Human Services recommendations into consideration when designing IPEMs to optimise accessibility to health information to improve patient compliance and outcomes18 .
Legal framework Things get even more confusing as there is no universal legal framework in Europe for advertising medical services. Results of a recent survey administered by the European Union of Medical Specialists (UEMS) show that advertising medical services is currently allowed in more than half of the EU countries. The lack of uniform regulations and guidelines across Europe creates legal inconsistencies and leads to unfair competition. Advertising is still not allowed in Belgium, Croatia, France, Luxembourg, Greece, Cyprus, Estonia, and Slovenia, while in Bulgaria and Slovakia there is no legislation covering this specific matter. Regarding who can advertise, no differentiation among individuals, corporations, and medical doctors is made in most countries. In countries where advertising is not allowed, no exception for anyone is made. In most countries that allow advertising, materials can be submitted to specific central regulations. These must comply with ethical standards, and the information provided must be truthful, accurate, and not create false expectations. In Germany, Italy, Switzerland, and the UK, for instance, advertising is regulated and controlled by state agencies, peer reviewed by national associations. In Austria, regulations are issued by the Austrian Medical Chamber and entail restrictions on advertising channels: no advertising is allowed on television or other mass media platforms.
There are issues caused by the non-uniform approach to advertising medical services in Europe. Physicians working in countries where advertising is not allowed suffer from the competition of neighbouring countries where it is allowed. There is quite an outflow of patients going abroad for treatment, not because the same treatment is not offered at home or is not equally good at home, but simply because they are attracted to a different country by commercials. Since their own doctors cannot promote themselves, patients may not even know that they offer the same services for the same or even better price. Therefore, we need European regulations to prevent unfair competition19 .
What should the position of the EAU be? The European Association of Urology (EAU) needs to better educate its members and the public, especially those who do not have access to English literature. The EAU recently released an update of their practical guidelines for effective and professional use of social media communication technologies by urologists20, and it is also providing carefully worked-out patient education materials (PEM) on 24 urological topics. Although these materials have a better readability compared to similar sources, a simplification of certain chapters might be helpful to facilitate better patient understanding. The EAU Patient Information website is a central web portal covering 18 European languages, with free access to information collected from its own sources such as the EAU Guidelines and other high-quality sources. Our aim for this web portal is to provide useful, accurate, unbiased, high-quality, and evidence-based information pertaining to all urological diseases. As computer literacy and internet access are continuously increasing, there is an emerging responsibility of the EAU and the national medical societies to address this important issue. We owe this to our patients, to our colleagues, and to our urological community.
The EAU Patient Information website can be found at patients.uroweb.org/ References
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Internet-based health information? J Med Internet Res, 2006. 8(3): p. e22. 3. Chen, X. and L.L. Siu, Impact of the media and the internet on oncology: survey of cancer patients and oncologists in Canada. J Clin Oncol, 2001. 19(23): p. 4291-7. 4. Basch, E.M., et al., Use of information resources by patients with cancer and their companions. Cancer, 2004. 100(11): p. 2476-83. 5. Eysenbach, G., The impact of the Internet on cancer outcomes. CA Cancer J Clin, 2003. 53(6): p. 356-71. 6. Asafu-Adjei, D., et al., Misinformation on the Internet regarding Ablative Therapies for Prostate Cancer. Urology, 2019. 133: p. 182-186. 7. Wang, Y., et al., Systematic Literature Review on the
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