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available at www.sciencedirect.com journal homepage: www.europeanurology.com/eufocus
Mini Review – Prostate Cancer
Impact of the Internet on Patient-Physician Communication Aisha T. Langford a,*, Timothy Roberts b, Jaytin Gupta a, Kerli T. Orellana a, Stacy Loeb a,c,d a
Department of Population Health, NYU Langone Health, New York, NY, USA; b NYU Health Sciences Library, New York University School of Medicine, New
York, NY, USA; c Department of Urology, NYU Langone Health, New York, NY, USA; d Manhattan Veterans Affairs Medical Center, New York, NY, USA
Article info
Abstract
Associate Editor: Derya Tilki
Data from the Health Information National Trends Survey (HINTS) show that the Internet is the first place people go to when they need information about health or medical topics. Searches for online health information have both benefits and challenges for patient-physician communication. To fully appreciate these issues, it is important to understand the following: (1) who is going online; (2) why are they going; (3) where are they going; (4) what needs are being met; and (5) how, if at all, do they discuss health information found online with their doctors. The objective of this mini-review is to highlight contemporary issues regarding the impact of the internet on patient-physician communication and to present directions for future research. Patient summary: The growing use of the Internet has implications for people seeking information on health matters. Our review shows that 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 medical visits. © 2019 European Association of Urology. Published by Elsevier B.V. All rights reserved.
Keywords: Health communication Communication Patients Physicians Urology Information-seeking behavior Internet Prostatic neoplasms
* Corresponding author. Department of Population Health, NYU Langone Health, 227 East 30th Street, New York, NY 10016, USA. Tel.: +1 646 5012914. E-mail address:
[email protected] (A.T. Langford).
1.
Introduction
As of July 2019, the market and consumer data company Statista estimated that 4.33 billion people worldwide were active Internet users (representing 56% of the global population), with North America and Northern Europe sharing internet penetration rates of 95% in their respective populations [1]. The growing use of the Internet has implications for health information-seeking. For example, as more emphasis is placed on patient self-management and empowerment, patients are increasingly going online to find health information [2,3]. This trend has benefits and drawbacks with regard to patientphysician communication. Patients who seek health information online may be more knowledgeable and clear about their
goals for treatment, which in turn may positivelyaffect patientphysician communication and decision-making [2–4]. Conversely, patients may be exposed to misinformation online, which can make them skeptical about evidence-based treatments and thereby negatively affect patient-physician communication and decision-making [4,5]. The objective of this mini-review is to highlight contemporary issues regarding the impact of the Internet on patient-physician communication and to present areas for future research. 2.
Internet health information-seeking behaviors
Prior research has shown that older adults, racial/ethnic minorities, and those with lower socioeconomic status and
https://doi.org/10.1016/j.euf.2019.09.012 2405-4569/© 2019 European Association of Urology. Published by Elsevier B.V. All rights reserved.
Please cite this article in press as: Langford AT, et al. Impact of the Internet on Patient-Physician Communication. Eur Urol Focus (2019), https://doi.org/10.1016/j.euf.2019.09.012
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Table 1 – Curated list of reputable sources of online health information to recommend to urology patients. Organization
Description
General websites with information for urological conditions AUA Urology Care Foundation: patient information Published by the official foundation of the AUA. The website provides comprehensive and reliable urologic health information for patients urologyhealth.org and the public. Tel. +1 800 8287866 EAU patient information The EAU patient education portal. Material published on the site takes https://patients.uroweb.org/ into account the existing scientific evidence, the experience of medical experts and nurse practitioners, and the views of the patients. Most Tel. +31 26 3890680 pages are translated into seven languages. The Other resources tab includes links to patient support groups throughout Europe and the USA. Many medical specialty associations have developed their own patient BAUS patient information www.baus.org.uk/patients information websites that offer guidance in sync with the association’s Tel. +44 207 8696950 guidelines. The BAUS patients page is a good example. An interesting feature for patients is the ability to search conditions by typing the symptoms they are experiencing. This site lists patient-focused brochures organized by different CUA patient information urological topics including urinary incontinence, overactive bladder, www.cua.org/en/patient Tel. +1 514 3950376 and urological cancers. The site also features a Top 17 Questions in Urology. UK-based organization supporting people with all forms of cystitis, Bladder Health UK overactive bladder, and continence issues. Patients can connect https://bladderhealthuk.org/ Tel. +44 121 7020820 through chat rooms and active Twitter and Facebook accounts. There is also a confidential hotline for patients seeking information, help, and support. MedlinePlus is the US National Institutes of Health website for patients MedlinePlus https://MedlinePlus.gov/ and their families and friends. It is a comprehensive site that health https://MedlinePlus.gov/esp professionals and consumers can depend on for information that is authoritative and up to date. General health videos including those dedicated to urological conditions mdconversation Developed by faculty from the University of Calgary in Alberta Canada, www.youtube.com/user/mdconversation mdconversation delivers multimedia presentations on numerous health issues, treatments, and procedures, including many with a urologic focus. It is notable that these presentations comply with the HONcode standard and were approved by the CUA Patient Information Committee. General podcasts and radio including shows dedicated to urological conditions Podcasts are a growing venue for health care providers to create Urology Care Podcast: official podcast from the AUA Urology Care Foundation patient information. This website has an extensive archive of podcasts www.urologyhealth.org/living-healthy/podcast that patients can play on the web or through Soundcloud. Tel. +1 800 8287866 The Original Guide to Men’s Health Developed by the University of Washington Department of Urology in (Apple iTunes) the USA. The podcast launched on the iTunes platform in May 2019 with a series of lectures on men’s health focusing on general and specific urological concerns. A weekly 1-h radio talk show on patient health produced by the Your Health Radio https://yourhealthradio.org University of North Carolina Department of Family Medicine. It Tel. +1 919 9660210 provides practical health-related news and information to listeners. Past shows are archived and searchable on the website. A SiriusXM radio channel hosted by specialists from NYU Langone Doctor Radio www.siriusxm.com/doctorradio Health. Urological conditions are often featured on the show; however, topics extend beyond medicine to such areas as nutrition, fitness and exercise, parenting, and integrative medicine. Resources for specific urological cancers A US-based advocacy organization devoted to advancing bladder Bladder Cancer Advocacy Network www.bcan.org/learning-about-bladder-cancer/ cancer research and supporting those impacted by the disease. The site Tel. +1 888 9012226 includes extensive patient education material, along with links to inperson and online support communities and clinical trials. An international charity focused on eliminating suffering and death Kidney Cancer Association www.kidneycancer.org/ from renal cancers. The website complies with the HONcode standard for trustworthy health information and features information on USA: +1 800 8509132 International: +1 847 3321051 treatments, clinical trials, and supports for patients. A hotline also Nurse hotline: +1 503 2157921 provides information to patients Monday–Friday, 9 a.m.–5 p.m. (Pacific time). A worldwide organization dedicated to the research and eradication of Prostate Cancer Foundation prostate cancer. The website includes excellent web and social media www.pcf.org/patient-resources/ resources as well as a comprehensive patient guide. Tel. +1 800 7572873
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English, Spanish, German, Portuguese, Russian, Italian, Slovenian
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English, French
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AUA = American Urological Association; BAUS = British Association of Urological Surgeons; CUA = Canadian Urological Association; EUA = European Urological Association.
Please cite this article in press as: Langford AT, et al. Impact of the Internet on Patient-Physician Communication. Eur Urol Focus (2019), https://doi.org/10.1016/j.euf.2019.09.012
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Fig. 1 – MedlinePlus checklist for evaluating Internet health information. Source: https://medlineplus.gov/webeval/ EvaluatingInternetHealthInformationChecklist.pdf.
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health literacy are less likely to seek health information on the Internet compared to their counterparts [6]. Other studies show that patients look for health information on the Internet because of curiosity, dissatisfaction with physician performance, poor perceived patient-provider communication, visit-induced worry, and health anxiety [4,7]. Furthermore, different online channels may serve different purposes [8]. Some patients turn to social media (eg, blogs) for emotional and social support from other patients with the same condition [9], whereas websites such as Wikipedia and MedlinePlus.gov may meet patients’ health information needs by helping them to understand diseases and treatments [8]. In a systematic review of the impact of online health information-seeking on patient-physician relationships, Tan and Goonawardene [2] concluded that “Internet health information seeking can improve the patient-physician relationship depending on whether the patient discusses the information with the physician and on their prior relationship”. Silver [10] explored barriers and facilitators for patients aged 50 yr in communicating with their doctors about health information found online, including embarrassment (barrier) and doctor-initiated inquiries (facilitator). 3. Social media and potential exposure to misinformation Since the early 2000s, social media platforms have allowed people to create and share content, and to connect and interact with others. Today, social media is increasingly used for health-related purposes [3,11–13]. A systematic review by Smailhodzic et al [3] revealed that the most common effects of social media use by patients was better self-management and enhanced psychological wellbeing. They also found that patients’ social media use affected the patient-provider relationship in positive and negative ways. Recent studies have quantified the prevalence of misinformation for urological conditions [5,14]. Inaccurate or misleading information appears to be highest for prostate cancer [5,14]; articles related to kidney, bladder, and testicular cancers shared on social media also contained misinformation. In general, public engagement with social media posts (likes, shares, and comments) is higher when they contain misinformation, nonrecommended therapies, or patient narratives [5,14,15]. This suggests that an important role for health care providers is to discuss high-quality online resources with their patients. 4. Communication about online information during clinical encounters As more patients are Internet-informed, it is likely that some will bring health information found online to their medical visits. In this scenario, the “three Rs” as described by Mundluru et al [16] may be helpful: reassure, redirect, and refer. Reassure is explaining to patients that the condition or intervention they read about online may not apply to
them, while acknowledging and exploring the patient’s rationale for thinking that it might. Redirect is the physician’s fiduciary duty and ability to steer patients toward medically verified sources of health information online. Refer is the general concept whereby some patients will need to be referred to other members of a multidisciplinary team so that their health care needs can be comprehensively addressed. Providers can also work with consumer health librarians to identify reputable sources of online health information to recommend to patients (Table 1) [17]. Discussing tips for evaluating health information during medical visits may also enhance the patient-physician relationship; Figure 1 shows an example checklist. Considerations for creating and accessing health 5. information on the Internet For those seeking to develop online health education materials, frameworks such as the Patient Education Materials Assessment Tool (PEMAT) and DISCERN instrument can be helpful [18,19]. Following plain language principles can also help to ensure that online health information is understandable and accessible to a wide variety of patients [20,21]. For example, providers should use everyday language instead of medical jargon and present health information in small “chunks” with informative headers [22]. Tools such as screen readers can help people with visual impairment in accessing health information on the Internet, while closed captioning and written transcripts can help people with hearing impairment in accessing health information on video sharing websites such as YouTube [23]. Providing health information in different formats online (eg, podcasts, videos, and visual displays) may increase the likelihood of reaching patients with varying literacy levels and health information-seeking preferences. Lastly, access to online medical records may provide opportunities for patients to monitor their health information directly (eg, test results and medication lists). However, some patients do not access online medical records for logistical and personal reasons [24,25], which may affect patient-physician communication by reducing the number of options available for patients to communicate with their doctor (eg, e-mailing a question through the patient portal). 6.
Conclusions
The Internet provides many opportunities to enhance patient-physician communication. Online health information can support patients’ knowledge and help to clarify their preferences for treatment, potentially enhancing shared decision-making. Conversely, the spread of misinformation on online networks has the potential to negatively affect patient-physician communication. Future research should explore how urology patients and providers evaluate online health information, the degree to which they differ in what is considered “good” health information, and the prevalence of discussions about online health information during clinical encounters.
Please cite this article in press as: Langford AT, et al. Impact of the Internet on Patient-Physician Communication. Eur Urol Focus (2019), https://doi.org/10.1016/j.euf.2019.09.012
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Conflicts of interest: Stacy Loeb has received travel expenses from Sanofi
[11] Benetoli A, Chen TF, Aslani P. Consumer perceptions of using social
and consulting fees from Lilly, Lumenis, and Bayer, and holds equity in
media for health purposes: benefits and drawbacks. Health Infor-
Gilead. The remaining authors have nothing to disclose.
matics J. In press. https://doi.org/10.1177/1460458218796664. [12] Sedrak MS, Salgia MM, Decat Bergerot C, et al. Examining public communication about kidney cancer on Twitter. Clin Cancer Infor-
Acknowledgments: Stacy Loeb is supported by the Prostate Cancer Foundation and the Edward Blank and Sharon Cosloy-Blank Family Foundation.
mat 2019;3:1–6. [13] Leveridge MJ. The state and potential of social media in bladder cancer. World J Urol 2016;34:57–62. [14] Alsyouf M, Stokes P, Hur D, Amasyali A, Ruckle H, Hu B. “Fake news” in urology: evaluating the accuracy of articles shared on social
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Please cite this article in press as: Langford AT, et al. Impact of the Internet on Patient-Physician Communication. Eur Urol Focus (2019), https://doi.org/10.1016/j.euf.2019.09.012