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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