The Quality and Fidelity of Vascular Information on the Internet


Role of the Internet in Medicine

The internet has become an essential medium of communication and a popular disseminator of verifiable and non-verifiable information. In recent times, it has replaced many in-person contacts within the healthcare sector. With the volume of information now freely published and available and topics easily searchable, patients are increasingly using the internet to locate providers, to seek to reduce costs, to gain personal health-related knowledge, to communicate with physicians, to link with social support, to offer and to exchange advice in support groups, and foster self-care. Healthcare providers and organizations have adapted to this increasing utilization of the internet to promote their brands and services, engage with the public, educate and interact with patients and caregivers, and even recruit patients to clinical trials. , Additionally, the internet has improved communication between physicians by creating and widening professional networking, enhancing the sharing of medical knowledge, speeding the dissemination of research, and promoting the debate on healthcare policy and practice issues. An example of the insertion of social media into professional activities is that the American College of Surgeons 2015 Clinical Congress had over 55 million impressions on Twitter from 15 thousand tweets generated by nearly 3 thousand users, a more than 10-fold increase compared to the 2013 Congress. With the internet permeating throughout every aspect of medicine and healthcare, a better understanding of the quality and fidelity of the information that is currently available for both patients and their providers on the subjects of vascular diseases, their therapies and their outcomes is essential.

The use of direct-to-patient telehealth, where physicians are able to interact with patients via phone calls or video conferencing to treat minor illnesses, has rapidly grown in recent years, and has increased access to healthcare for many patients. In 2015, there were approximately 1.25 million virtual visits, a number that continues to grow with increasing access to the internet and with changes in insurance and medical board policies. This new medium of doctor–patient interaction increases convenience for the patient, alters the physicians’ conventional approach to the interactions and may represent an overall move towards more consumer-orientated, patient-centered care. However, while little is known about how these virtual visits are viewed by patients or physicians, or how they affect overall costs, anecdotal evidence suggests greater patient satisfaction, reduced costs and enhanced value especially for simple diagnoses and therapies. It is important to note that there are studies that have questioned the safety and efficacy of telehealth, finding that virtual visits result in an increased number of missed diagnoses and fewer orders for guideline-suggested diagnostic testing compared to in-person visits. , The current COVID-19 pandemic mandated changes in care will provide a rich dataset to explore all aspects of virtual care and help inform further developments in the field.

Social media has transformed modern communication, allowing millions of people around the world to rapidly interact using the internet. Social media has also changed how physicians communicated with each other. Twitter is increasingly being used by surgeons to share interesting case information, including imaging, with colleagues across the globe as a means to educate, seek outside opinion, build personal and institutional brand, and enhance reputation. Additionally, new research findings and respective commentary can now be rapidly disseminated to others via open fora, which may be moderated or unmoderated for quality and accuracy. Many claim that sharing patient imaging or case details, even if de-identified, can be traced back to specific patients and thus constitutes a violation of Health Insurance Portability and Accountability Act (HIPAA). Multimedia platforms allow physicians, trainees, and other healthcare workers to engage with each other, representing an enhancement in education and networking ability. The use of public social media platforms such as Twitter, Instagram, and LinkedIn and commercial multimedia platforms such as Zoom, Teams, Webex and GoToMeeting are now integral to the professional communities of healthcare. See Chapter 206 (Social Media in Vascular Surgery) for more detailed information on the impact of social media in the practice of vascular surgery.

Internet for Patient Education

According to the Pew Research Center survey in 2011, 80% of internet users have looked up information about health topics, which translates to 59% of all US adults in the current population. Multiple participants in the health care space (hospitals or health organizations, professional organizations, and industries selling medical devices) have websites that target the consumer patients with the goal of education, as well as self-promotion, advertising and direct-to-consumer marketing. There is also an abundance of open-access medical news websites promoting health information that targets patients directly. The quantity of this freely available health information, much of which is not peer-reviewed, can be empowering to patients. Less than a third of patients that search for health information online do so unrelated to a clinic visit; the remainder of patients who search are split between seeking information before or after a clinic visit. Patients that search and read about their condition before a clinic visit have a better understanding of their disease and are better able to participate in shared decision-making on their care. For patients that search for health information after a clinic visit, web-based information is a useful supplement to the verbal communication with their physician and can reinforce key information and assist in consolidating shared decision-making.

However, the lack of quality control and regulation of online health information creates an environment where patients can readily access inaccurate or unreliable information. This has the potential to lead to delays in healthcare, engender mistrust in their providers, result in noncompliance, and potentially waste resources as physicians spend more time correcting misconceptions or being forced into defensive medical practices. Additionally, while the average American citizen accessing the internet has the reading ability of 7th–8th grade level, most websites are written at a more advanced level, greatly hindering patient comprehension.

The DISCERN instrument is a measurement tool designed to help health consumers and information providers assess the quality of written information about healthcare treatment options. Another available tool, the Health on the Net Foundation Code of Conduct (HONcode) for medical and health websites, addresses the reliability and credibility of information. In a recent review by Daraz et al . of 153 studies evaluating the quality of websites oriented for patients from 2008 to 2018, DISCERN and HONcodes were the two most used quality assessment tools ( Table 207.1 ). Of the 87 studies (5693 websites) that used DISCERN, website qualities ranged between good to very good, but no websites were categorized as excellent. Of the 74 studies that used HONcode, 18% (1004) were HONcode certified. Government organization websites are graded very good by DISCERN, while academic organizations receive a rating of good, and media-related sources were ranked poor.

TABLE 207.1
A Summary of Website Quality Rating Tools
Instrument Name Description Principles of the Instrument
DISCERN Questionnaire with 16 questions rated on a
5-point scale
Organized into 3 sections.
Is the publication reliable? How good is the quality of information on treatment choices? Overall rating of the publication?
HONcode Code of conduct to provided quality health information ,
Websites evaluated and certified by the HON Foundation
HONcode seal demonstrates intention to publish objective and transparent information
Authority, Complementarity, Confidentiality, Attribution, Justifiability, Transparency, Financial disclosure, Advertising
Ingledew Validated tool that incorporates important dimensions of instruments like HONcode, DISCERN, and JAMA benchmark with other criteria identified as important to patients Affiliation, Accountability, Interactivity, Structure and organization, Readability, Content quality
JAMA benchmark Four benchmarks established by the American Medical Association Authorship, Attribution, Currency, Disclosure
LIDA Evaluates design and content of health websites with a series of questions that are scored on a 0–3 point scale for a total score of 144 Accessibility, Usability, Reliability
Michigan score University of Michigan Consumer Health Website Checklist is a questionnaire with 43 questions with a total possible point of 80
0–25 is considered poor, 26–40 weak, 51–60 average, 61–70 good, and 71–80 excellent
Authority, Currency, Information, Scope/Selection, Audience, Value, Accuracy, Advertising, Navigation, Speed, Access

In an older review of broader topics on the internet, Eysenbach et al . found that the percentage of inaccuracies were higher in studies that used a higher level of evidence. Studies that did not report the criterion standard or those that used personal opinions found an average of 15.4% of the websites to be inaccurate. In contrast, those that used literature, textbooks, or expert consensus found inaccuracies in 35.3% of websites and those using clinical guidelines found 38.3%. Most studies (55, 70%) in the review conducted by Eysenbach et al. concluded that information quality is a problem on the internet, and there are no evidence-based guidelines on the acceptable quality of web-based medical information. However, studies on clinical vascular topics of interest to patients make up only a small percentage of studies in these reviews. In Daraz et al ., only 3 out of 153 studies were related to vascular surgery. In comparison, the most popular field of study, orthopedic surgery, had 24 studies followed by internal medicine with 17 studies. In Eysenbach et al . , only 2 out of 79 studies were vascular surgery related. Soot et al . evaluated the accuracy and quality of patient-oriented information on the internet for three common vascular diseases, abdominal aortic aneurysm (AAA), carotid endarterectomy (CEA), and leg ischemia, using self-developed criteria as early as 1999. They found that overall quality was low, with a third of websites presenting misleading or unconventional information.

Since the publication of Soot et al . , several more studies have been published related to AAA, carotid disease, varicose veins, venous malformation, hemodialysis access, lymphedema, and lastly vascular surgery in general ( Tables 207.2 and 207.3 ). These studies used various evaluation criteria including the Michigan Consumer Health Website Evaluation Checklist, LIDA tool, Journal of the American Medical Association (JAMA) benchmarks, HONcode, a comprehensive website evaluation tool developed by Ingledew, and an information score developed by Soot et al . Although the studies conducted by Grewal et al . and Keogh et al. both evaluated carotid endarterectomy using the LIDA tool, Grewal et al. found acceptable accessibility (73%) but poor usability (59%) and reliability (50%). In contrast, Keogh et al. found websites to be acceptable across all three domains (83% for accessibility, 75% for usability, and 87% for reliability). The varying results using the same tool on the same topic could reflect improved website quality between the time interval that the two studies were published, low reliability across raters, or other differences in their methods. Significant variations in evaluation tools used by each study and lack of available guidelines for acceptable information quality for each evaluation tool makes it difficult to draw conclusions from these studies. However, most of these studies have consistently demonstrated significant variability in quality between websites. , Additionally, all studies have demonstrated that online, patient-oriented resources are very difficult to read as they are written in language that is too advanced for the average patient. Tran et al. assessed not only readability but also complexity and density of data as well as text design, vocabulary, and organization and found that in the case of lymphedema, online resources are too sophisticated for the average US adult and thus fail to achieve their goal of informing the patient.

TABLE 207.2
Characteristics and Findings of Studies Evaluating Online Patient Education Resources in Vascular Surgery
Study N Topic Findings
Soot, 1999 59 AAA (17) IS: mean 39.8 out of 100
CEA (19) IS: mean 44.8 out of 100
Leg ischemia (23) IS: mean 24.8 out of 100
Libertiny, 2000 41 Varicose veins Median (IQR)
IS: 21.5 (7.5–48.5) out of 100
Bailey, 2012 55 AAA Median IQR
Michigan score: 36 (25–56) out of 80
FRE: 39 (29–47)
Grewal, 2012 189 CEA LIDA total: mean 63.9%
LIDA accessibility: mean 72.6%
LIDA usability: mean 58.9%
LIDA reliability: mean 50.2%
FRE: mean 53.5%
GFI: mean 12.3
EVAR LIDA total: mean 66.2%
LIDA accessibility: mean 76.9%
LIDA usability: mean 60.2%
LIDA reliability: mean 52.3%
FRE: mean 50.5
GFI: mean 12.1
Varicose veins LIDA total: mean 65.4%
LIDA accessibility: mean 77.8%
LIDA usability: mean 63.6%
LIDA reliability: mean 43.8%
FRE: mean 58.6
GFI: mean 10.7
Alsafi, 2013 36 Vascular surgery 1/36 scored above 90%
LIDA accessibility: mean 84%
LIDA usability: mean 53%
LIDA reliability: mean 53%
FRE: 1/36 scored above 60
Keogh, 2014 100 CEA (50) Median (range)
LIDA total: 82% (62%–94%)
LIDA accessibility: 83% (57%–98%)
LIDA usability: 75% (50%–100%)
LIDA reliability: 87% (33%–100%)
Carotid stenting (50) Median (range)
LIDA total: 83% (56%–98%)
LIDA accessibility: 83% (57%–98%)
LIDA usability: 83% (58%–100%)
LIDA reliability: 84% (47%–100%)
Tran, 2017 10 Lymphedema SMOG: 14
Complexity score (PMOSE/iKIRSCH): 6.7 (“low” complexity, 8th–12th grade education)
Suitability score: 45% (40%–69% means adequate)
Pass, 2018 20 Sclerotherapy for venous malformations Mean (range)
FRE: 44 (24.2–70.1)
JAMA benchmark total: 2.05 out of 4 benchmarks
JAMA authorship: 8/20 websites
JAMA attribution: 5/20 websites
JAMA disclosure: 17/20 websites
JAMA currency: 11/20 websites
HONcode: 0/20 websites
Cheun, 2018 63 Hemodialysis access 16% of the websites were written at a college reading level or higher
Educational content: mean 2.8 out of 7.8
Yan, 2020 103 Varicose veins Quality score: 22.5 (5.9) out of 42
Accountability 5.7 (4.5) out of 16
Interactivity 2.4 (0.9) out of 6
Structure 3.6 (0.8) out of 5
Content 11.6 (3.8) out of 15
FK grade level: 10 (2) grade
SMOG: 10 (1) grade
AAA , abdominal aortic aneurysm; CEA , carotid endarterectomy; EVAR , endovascular aortic repair; FRE , Flesch Reading Ease; FK grade level , Flesch–Kincaid grade level; GFI , Gunning Fox Index; IQR , interquartile range; IS , information score, a composite score on content ranging from 0 to 100 developed by Soot et al.; PMOSE/iKIRSCH , scores material based on structure (1–4), density (1–10), and dependency (0–1), include lists, charts, and graphical display; SMOG , Simple Measure of Gobbledygook.

TABLE 207.3
Evaluation of Written Internet Resources for Patients with Vascular Disease
Readability: Poor – FRE score 0–49 or text easily understandable by college students using other readability formulas; Fair – FRE score 50–59, or text easily understandable by high school students; Average – FRE score 60–69 or text easily understandable by 8th graders; Good – FRE score 70–79 or text easily understandable by 6th and 7th graders; Excellent – FRE score 80 or above or text easily understandable by 5th graders or younger.
Information Composite Score Accessibility Accountability Usability Reliability Readability
AAA Fair Average Fair Poor
Amputation Average Average Average Average Fair
Carotid stenting Excellent Excellent Excellent Excellent
CEA Fair Good Good Good Good Fair
DVT Average Average Average Average Fair
Hemodialysis Fair 16% were poor
Leg ischemia Poor
Lymphedema Poor
PE Average Average Average Average Fair
Sclerotherapy for venous malformation Average Poor
Thoracic outlet syndrome Good Average Fair Average Fair
Varicose veins Average Average Good Fair Average Average Fair
Vascular surgery Excellent Average Average 97% below Average
Poor: 0%–20%; Fair: 20%–40%; Average: 40%–60%; Good: 60%–80%; Excellent: 80%–100%.

Complementary to the availability of written materials online, video services have risen in popularity as information sources. YouTube has become a popular platform for patient education, with more than a third of patients watching health-related videos. YouTube videos oriented for patients are less studied than traditional websites. Radonjic et al . evaluated patient-oriented YouTube videos for abdominal aortic aneurysm (AAA) using the DISCERN instrument, the JAMA benchmark, and an adapted AAA-specific score and found that videos scored poorly across all three assessment tools. Similar to online written materials discussed above, videos made for the purpose of educating patients would benefit from a peer review process. Additionally, these videos should ensure completeness by updating information to align with current guidelines. Patients would benefit from assistance from providers with navigating the information found on YouTube, such as a list of reliable videos or channels.

Patients place significant trust in online health information, which can influence their treatment decisions, the questions they pose to their providers, and even the decision to visit a provider. However, studies examining patient-oriented material online have consistently shown significant variations in quality. Thus, it is essential that physicians are familiar with information available on the internet in order to effectively communicate with patients, clarify misconceptions, and provide high-quality websites or videos to interested patients. Additionally, webmasters, especially from healthcare organizations and professional societies, should be aware of the criteria for high-quality websites and videos and should improve any areas of deficiency ( Table 207.4 ).

TABLE 207.4
Best Practices
Clearly identify author, credential and affiliation
Use citation and cite reliable work such as journal article or peer-reviewed sites
Disclose date of creation and modification
Disclose sponsorship or advertisement
Optimize structure of the text and webpage
Improve interactivity by allowing discussion forum, multimedia, educational support, and contact information for editorial team or author
Accurate content
Appropriate readability

Aside from open access online resources, the electronic patient portal is an alternative means for patients to access important medical information. The patient portal allows patients to access their health information such as lab results, securely message the provider, schedule appointments, enter health metrics such as blood pressure, and view provider-nominated educational materials. However, the current utilization of electronic patient portals is generally low. While 88% of hospitals and 87% of healthcare professionals utilize patient portals, only 15%–30% of patients have electronically accessed their health information. A study by Urowitz et al. showed that patients think positively of the Health Library, a component of patient portals that allows access to educational materials, and thought access to credible health information increased their awareness. However, some patients had significant difficulties with navigating the Health Library and finding the right information, with many expressing desire for providers to refer specific information from the Health Library. Increased provider participation in the patient portal, such as sending patients relevant health educational materials, may encourage patient use and improve the quality of online information accessed by their patients.

Internet for Physician Education

Online resources can make important contributions to physician training in the current digital age. Studies on available open access resources for physicians have focused on two key issues: (1) training program website quality, (2) YouTube videos for vascular procedures.

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