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Health Information Your Patients See in the Media & on the Web: Engaging Patients with Reliable Health Information Kacy Allgood, MLS, AHIP & Elaine Skopelja, MALS, AHIP Indiana University School of Medicine, Ruth Lilly Medical Library, Indianapolis, IN Information Seeking Behavior Background The Good Patients often seek information after interacting with health professional. Some patients will seek information before interacting with a health professional. Some patients will seek information instead of contacting a health professional. Online Health Information Barriers to effective use of online health info Low health literacy or numeracy Generally, patients and families are better informed and prepared because of the many available online options to answer their health related questions. Patients trust Google Difficult medical terminology & concepts to lead them to reliable information. The Bad Patients with less education or lower literacy may be less aware of the varying levels of integrity of websites and may have a harder time deciphering the content and reliability of websites. Determining the relevance & reliability of search results Many patients, even the well-educated, could use guidance in locating the most relevant and authoritative information. Direct-to-consumer advertising increases patient engagement with health care providers. Poorly organized websites Celebrity diagnosis or prevention advocacy can double the frequency of online searches for health information. (6) Summary Non-authoritative sites sometimes masquerade as authoritative information. It can be difficult to determine accuracy and sponsorship. There is an overwhelming amount of information currently available to patients/health consumers and the quality varies widely. Guiding patients to reliable information can lead to improved engagement with health professionals, such as asking better, more focused questions. Patients can also attain an increased understanding of the details of their problem. Ultimately, patients put more trust in the personal relationships with their health care providers than the information found online, but providers must be aware of what patients are viewing. People experiencing health care access issues search for online health information more often than those who do not have access issues. Google and Medline Plus return better search results for quality health information than other search engines. Search engine ranking heavily influences user selection. Information overload What types of info are patients looking for? 1) Clinicians who understand their patients’ information seeking behaviors will be in a better position to help their patients make informed health decisions.(1) 2) Healthcare professionals and institutions can increase their online presence. (5) Dx Authoritative information: Evidencebased therapies Alternative medicine 1) Clearly notes personal and agency authorship 2) Contains recent, evidence-based content 3) Is easily navigated & well organized 4) Preferably does not contain sponsored ads Wellness Google searches were completed on 8/20/2015, on “cancer”, “breast cancer symptoms,” “breast cancer treatment,” “lung cancer symptoms” and “lung cancer treatment”, “autism symptoms,” “autism treatment” and “DNA Testing” Information on diseases/illness Where do patients look for info? Google Online news Social Media Wikipedia Traditional news outlets (TV, radio) 4) Health professionals and health educators can help patients understand medical research, and distinguish emotional support, i.e. advocacy from information support, i.e. evidence-based information. 5) Due to ever-changing and variable quality Google search results, offer a list of reliable links to interested patients. Results of Google Searches Search Locating & accessing health services 3) Health professionals and health educators can guide users to reliable health information. 6) Encourage transparency of relationships with sponsors. (3) Social support & Advocacy Primary Prevention How can I help my patients? Cancer •80% of oncologists did not recommend any websites, and 70% of oncologists advised parents of pediatric cancer patients not to look on the web •Families and patients may practice Information avoidance Autism •Autism treatment and advocacy websites often cite unsubstantiated information (2) •Peer review is cited, but is incorrect 20% of the time (2) •Advocacy websites often contain treatment information that is overly optimistic •Information about foregoing treatment is often excluded •Evidence-based interventions are limited •Many websites oppose vaccination (4) Results Excluding ads, 80-90% of Google’s top 10 search results linked to reliable health information sources or recent news articles (both with and without corporate sponsors) Information on tests – direct to consumer ads DNA Testing •Many commercial home testing agencies advertise direct-to consumer Results Excluding ads, only 40% of Google’s top 10 search results linked to reliable health information sources or recent news articles (both with and without corporate sponsors) Conclusions Beware! Google search results are highly variable. Some topics return better quality results than others. Search results are extremely dynamic - changing multiple times in a single day. Online ads abound – they are often the top, bottom and side results on the Google search page and are only differentiated by small image References 1. Rasmussen-Pennington, DM. I could be on Facebook now., Canadian Journal ILS, 37(3) 2013. 2. Di Pietro N, Whiteley L, Mizgalewicz A, Illes J. Treatments for Neurodevelopmental Disorders: Evidence, Advocacy, and the Internet. Journal of Autism and Developmental Disorders 43(1):122-133, 2013 3. Di Pietro NC, Whiteley L, Illes J. Treatments and Services for Neurodevelopmental Disorders on Advocacy Websites: Information or Evaluation? Neuroethics 5(2):197-209, 2012 4. Kata A. Anti-vaccine activists, Web 2.0, and the postmodern paradigm - An overview of tactics and tropes used online by the anti-vaccination movement. Vaccine 30(25):3778-3789, 2012 5. Venkatraman A, Garg N, Kumar N. Greater freedom of speech on Web 2.0 correlates with dominance of views linking vaccines to autism. Vaccine 33(12):1422-1425, 2015 6. Ayers JW, Althouse BM, Noar SM, Cohen JE. Do celebrity cancer diagnoses promote primary cancer prevention? Preventive Medicine 58:81-84, 2014 7. Germeni E, Schulz PJ. Information seeking and avoidance throughout the cancer patient journey: Two sides of the same coin? A synthesis of qualitative studies. Psycho-Oncology 23(12):1373-1381, 2014 8. Katz JE, Roberge D, Coulombe G. The Cancer Patient's Use and Appreciation of the Internet and Other Modern Means of Communication. Technology in Cancer Research & Treatment 13(5):477-484, 2014