A 52-year-old woman comes to the office complaining of a two-month history of pain and swelling in the small joints of her hands, feet and knees. She says, “Doctor, I’ve been searching the Internet, and I think I have rheumatoid arthritis. I have some questions for you.”
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Explore This IssueAugust 2016
The healthcare system in the U.S. is changing rapidly and dramatically. Integral to these changes is the development of new models of care, which incorporate e-health. E-health is defined by the World Health Organization (WHO) as “the use of information and communication technologies (ICT) for health. In its broadest sense, eHealth is about improving the flow of information, through electronic means, to support the delivery of health services and the management of health systems.” It also encompasses the delivery of health information for health professionals and health consumers through the Internet and telecommunications.
For many clinicians and patients, adjusting to this electronic healthcare environment has been challenging, time consuming and frustrating. In the past, only the physician had access to up-to-date scientific medical knowledge, and patients relied on this expertise and judgment for their care-management decisions. Advances in social media and online health materials have exponentially increased the amount of readily available medical information. Now, patients have direct access to medical information through a wide variety of online health resources, including patient portals where they can enter their medical records and email their doctor through the electronic health record; health information websites, such as the American College of Rheumatology, the Arthritis Foundation and MedlinePlus.gov; social networking; medical advice blogs; YouTube; “Dr. Google” with symptom search capability; telemedicine; and online doctor consults.
Healthcare providers want informed and actively engaged patients; however, this greater accessibility to health information has brought new challenges. For example, according to Pew Internet Project’s research and other reports, 60–80% of the adults in the U.S. have searched the Internet for health information, with 35% trying to self-diagnose their medical condition. However, only 41% of these “diagnosers” had physician confirmation of their condition. Also notable, three-quarters of the people seeking health information on the Internet “never,” “hardly ever” or only “sometimes” check the source of the information.
Although it’s easy to find arthritis and other health information on the Internet, the quality and reliability of the information are extremely variable. Website information is not required to meet specific standards, such as peer review. Finding reliable, unbiased and current information in a format that is understandable and usable is frequently complex and challenging.
Common questions patients pose online include what symptoms indicate, information about specific conditions, how a disease is diagnosed, treatment options with risk and benefits, potential outcomes, wellness and prevention strategies, financial issues and how to find a doctor. Although this information is often trusted as being accurate and helpful, because of the nature of the Internet, this trust may be misplaced. Factors that may influence an individual’s trust of online advice include the website attractiveness and visual anchors, ease of navigability, and perceived credibility and reliability, such as sponsorship, and the site’s underlying motivation, goals and integrity.
What sites appear and their ordering when performing a search is also important. A number of search engines are available, with Google, Bing, Yahoo! and Ask the most commonly used. The elements employed by search engines to determine a website’s ranking order are based on more than 200 factors in undisclosed proprietary algorithms that include key words, domain history, content length, reading level and how recently it was updated to name a few factors. In addition, websites may have paid advertising, which can significantly influence their ranking.
The National Institutes of Health (NIH), National Library of Medicine (NLM), the world’s largest biomedical library, produces electronic information resources that include PubMed, ClinicalTrials.gov and MedlinePlus. MedlinePlus is the NIH’s website for “patients and their families and friends” that provides reliable, up-to-date health information about diseases, treatments and wellness issues in understandable terms using text, picture and video formats. The site also gives links to the latest medical research and information about clinical trials. NLM has developed guidelines and a tutorial to assist individuals on how to evaluate health information from the Web.
The NLM and others suggest using the following principles to evaluate a website’s content:
Consider the Source
Determining the originator of a website is critical.
The domain name ending of a Web address (URL—Uniform Resource Locator) is a good starting point to identify the publisher of the site:
- .gov—associated with a government agency;
- .edu—signifies an educational institution;
- .org—belongs to a professional or nonprofit organization; and
- .com—a commercial or for-profit site (exceptions—a healthcare organization may use both .org and .com for their website).
Using the “about us” or the mission statement icon on the website home page can provide intended audience, information on the authorship, editorial boards, mission and intent. Also included may be the process of selecting or approving information, which may be called “editorial policy” or “selection policy” or “review policy.” This process can provide clues about biases. Is advertising included on the website, and is it clearly marked as such?
Although it’s easy to find arthritis & other health information on the Internet, the quality & reliability of the information are extremely variable.
Currency of the Site
Documentation of when the page was created, last updated or reviewed should be clearly visible. Larger sites may have a date on each topic page. Health information may change daily, so a site must be reviewed at least once a year. Sites like MedlinePlus.gov are updated daily.
Evidence & Facts, Not Opinion
The primary information source, such as biomedical literature, abstracts or links to other credible websites or experts in the field, should be easily located and verifiable on the Web page. The use of single cases and testimonials should not be used to constitute reliable proof confirmation. If statistics are used, do they come from a reliable source? Lastly, does the site provide links to other sites?
The site should clearly disclose the categories of personal information collected, website cookies, the ways in which that personal information may be used, the persons to whom the personal information may be disclosed and the security measures used to protect personal information.
Warning signs that suggest that health information may not be trustworthy are if:
- You cannot identify the author(s) or who is contributing to the page;
- There is a potential conflict of interest, such as selling a treatment;
- Information appears one sided or biased;
- Site information has not been reviewed or updated in the past year;
- The site claims 100% satisfaction and uses the word “cure” or “miracle”;
- No evidence is cited, and proof is based on testimonials; and
- Words are misspelled, grammar is poor, or “Something doesn’t seem right.”
Health Literacy Level
A provider’s assessment of a patient’s health literacy level, including demographic characteristics, knowledge of their condition and information management skills, is integral to assisting in e-health utilization.
In Title V of the Patient Protection and Affordable Care Act of 2010, health literacy is defined as “the degree to which an individual has the capacity to obtain, communicate, process and understand health information and services in order to make appropriate health decisions.” A common misconception is that health literacy is determined only by a person’s educational level and their ability to read. Health literacy is multidimensional and includes other factors, including age, gender, cultural and language barriers, illness and physical and mental limitations. In addition, health literacy encompasses the communication between the patient and all of the members of the healthcare system, including physicians and other health professionals, hospitals, insurers and pharmacies.
If learning ability is compromised, individuals may not be able to participate in shared decision making in disease management and wellness. For example, persons with limited health literacy are more likely to report their health as poor, have higher hospital admission rates, have a lesser quality of life and have earlier mortality. The report, The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy, indicates that only 12% of adults had the skills needed to effectively manage their health and prevent disease. A recent literature review indicated that major literacy issues in healthcare are ongoing.
Examples of patient behaviors that may indicate a literacy problem are:
- When asked to complete forms (either paper or using an electronic device), the information is incomplete or incorrectly answered. Patients may explain this by saying, “I forgot my glasses.”
- Individuals may demonstrate non-adherence to medication instructions or be unable to identify a medication’s name or purpose. They may use color or shape to identify medications.
- A person may frequently miss or cancel appointments. This may be related to a lack of their understanding about where to go, and appointment times and dates may not be clear to them if an electronic messaging system is used.
- Patients may react with anger or frustration when asked to do a management task they don’t understand.
- Care activities may be relegated to others with a common reply being, “My wife [friend, etc.] usually takes care of __________ [fill in any number of items here].”
By considering health literacy, clinicians can best understand and support patients by choosing the appropriate medical language to communicate with them. Staff can assist in e-health utilization, incorporate literacy principles in care activities and address office and visit procedures, including form completion, appointment reminders and transportation.
In the field of arthritis, there has been limited evidence-based research on the use of e-health activities for patients in the management of rheumatic diseases. Diseases including rheumatoid arthritis, osteoarthritis, systemic lupus erythematosus, juvenile idiopathic arthritis, psoriasis and regional musculoskeletal disorders have been studied with the focus being on quality and content of information on the Internet. There has been more work on integrating e-health into care management activities in other disciplines, especially oncology.
E-health has opened wonderful opportunities to patients and clinicians, yet provides major challenges in some ways analogous to drinking water from a fire hose. However, by understanding the mechanics and opportunities of e-health, providers can help determine how—with its effective use—the promises of greater patient engagement, satisfaction and management outcomes of overall improvement and cost efficient delivery of care can be realized.
Michelle Burda, MLS, is the education and health literacy coordinator for the National Network of Libraries of Medicine, Middle Atlantic Region, and Health Sciences Library System at the University of Pittsburgh. Her role is to support the efforts of the National Library of Medicine to provide all U.S. health professionals with equal access to biomedical information and improve the public’s access to information so they can make informed decisions about their health. She is responsible for training, outreach and development of classes on NLM resources and health literacy training in New York, New Jersey, Delaware and Pennsylvania.
Terence Starz, MD, is a clinical professor of medicine in the Division of Rheumatology at the University of Pittsburgh School of Medicine and is in practice at Arthritis and Internal Medicine Associates–UPMC in the Western Pennsylvania area. In addition, he is involved in clinical research projects, including rheumatoid arthritis outcome studies, and has participated in classification and intervention studies in fibromyalgia and healthcare utilization in low back pain. He serves on the Board of Directors of the Great Lakes Region of the Arthritis Foundation and the Pennsylvania Rheumatology Society.
Review the WHO’s National eHealth Strategy Toolkit.
Resources & Recommended Reading
- Alcorn N, Madhok R. Health information on the Internet. J Rheumatol. 2012 May;39(5):883–884. doi:10.3899/jrheum.120136.
- Ansani NT, Vogt M, Henderson BAF, et al. Quality of arthritis information on the Internet. Am J Health Syst Pharm. 2005 Jun 1;62(11):1184–1189.
- Berkman ND, Sheridan SL, Donahue KE, et al. Health literacy interventions and outcomes: An updated systematic review. Evid Rep Technol Assess (Full Rep). 2011;(199):1–941.
- Citrome L, Burda ML. A clinician’s best friend: The US National Library of Medicine’s patient resources. Int J Clin Pract. 2012 Nov;66(11):1018–1019. doi:10.1111/ijcp.12010.
- Ferwerda M, van Beugen S, van Burik A, et al. What patients think about E-health: Patients’ perspective on Internet-based cognitive behavioral treatment for patients with rheumatoid arthritis and psoriasis. Clin Rheumatol. 2013 Jun;32(6):869–873. doi:10.1007/s10067-013-2175-9.
- Grajales FJ, Sheps S, Ho K, et al. Social media: A review and tutorial of applications in medicine and health care. J Med Internet Res. 2014 Feb 11;16(2):e13. doi:10.2196/jmir.2912.
- Maloney S, Ilic D, Green S. Accessibility, nature and quality of health information on the Internet: A survey on osteoarthritis. Rheumatology (Oxford). 2005 Mar;44(3):382–385. doi:10.1093/rheumatology/keh498.
- Rains SA, Karmikel CD. Health information-seeking and perceptions of website credibility: Examining Web-use orientation, message characteristics, and structural features of websites. Comput Human Behav. 2009 Mar;25(2):544–553. doi:10.1016/j.chb.2008.11.005.
- Rhee RL, Von Feldt JM, Schumacher HR, et al. Readability and suitability assessment of patient education materials in rheumatic diseases. Arthritis Care Res (Hoboken). 2013;65(10):1702–1706. doi:10.1002/acr.22046.
- Richter JG, Becker A, Koch T, et al. Internet use in rheumatology outpatients in 2006: gender less important. Clin Exp Rheumatol. 27(1):15–21.
- Sadasivam RS, Kinney RL, Lemon SC, et al. Internet health information seeking is a team sport: Analysis of the Pew Internet Survey. Int J Med Inform. 2013;82(3):193–200. doi:10.1016/j.ijmedinf.2012.09.008.
- Singh AG, Singh S, Singh PP. YouTube for information on rheumatoid arthritis—A wakeup call? J Rheumatol. 2012;39(5):899–903. doi:10.3899/jrheum.111114.
- Stinson JN, Tucker L, Huber A, et al. Surfing for juvenile idiopathic arthritis: Perspectives on quality and content of information on the Internet. J Rheumatol. 2009;36(8):1755–1762. doi:10.3899/jrheum.081010.
- Thompson AE, Graydon SL. Patient-oriented methotrexate information sites on the Internet: A review of completeness, accuracy, format, reliability, credibility, and readability. J Rheumatol. 2009;36(1):41–49. doi:10.3899/jrheum.080430.
- van der Vaart R, Drossaert CHC, de Heus M, et al. Measuring actual eHealth literacy among patients with rheumatic diseases: A qualitative analysis of problems encountered using Health 1.0 and Health 2.0 applications. J Med Internet Res. 2013;15(2):e27. doi:10.2196/jmir.2428.
- Weiss BD. How to bridge the health literacy gap. Fam Pract Manag. 21(1):14–18.
- Internet skill-related problems in accessing online health information.
- Berland GK, Elliott MN, Morales LS, et al. Health information on the Internet: Accessibility, quality, and readability in English and Spanish. JAMA. 285(20):2612–2621.
- Fischer SH, David D, Crotty BH, et al. Acceptance and use of health information technology by community-dwelling elders. Int J Med Inform. 2014;83(9):624–635. doi:10.1016/j.ijmedinf.2014.06.005.
- McCarthy DM, Waite KR, Curtis LM, et al. What did the doctor say? Health literacy and recall of medical instructions. Med Care. 2012;50(4):277–282. doi:10.1097/MLR.0b013e318241e8e1.
- Schonlau M, Martin L, Haas A, et al. Patients’ literacy skills: More than just reading ability. J Health Commun. 2011;16(10):1046–1054. doi:10.1080/10810730.2011.571345.
- van Deursen AJAM. Internet skill-related problems in accessing online health information. Int J Med Inform. 2012;81(1):61–72. doi:10.1016/j.ijmedinf.2011.10.005.
- Pew Research Center Health and Technology in the US. 2013 Dec 4. Accessed May 1, 2016.
- Comstock J. Rock Health: 80 percent of Internet-connected adults use digital health tools. 2015 Oct 19. Accessed May 1, 2016.
- CDC Centers for Disease Control and Prevention Health Literacy Understanding Health Literacy. Accessed May 1, 2016.
- National Institute of Health.
- NLM in Focus. What is health literacy? 2016 Apr 13.
- Berkman N, Sheridan S, Donahue K, et al. Low health literacy and health outcomes: An updated systematic review. Ann Intern Med. 2011 Jul 19;155(2):97–107. doi: 10.7326/0003-4819-155-2-201107190-00005.
- Kutner M, Greenberg E, Jin Y, et al. The health literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). U.S. Department of Education. Washington, D.C.: National Center for Education Statistics. 2006 Sep.