Mpla 2009 The Impact Of Technology On Searching For Health Danielle De Jager Loftus

The Impact of Technology on
Searching for Health Information:
Searching for Health Information:
Online Communities of Support

Danielle De Jager‐Loftus, MFA, MSLIS
Asst. Professor, Technology/Medical Librarian
The University of South Dakota, University Libraries
I.D. Weeks and Lommen Health Sciences Libraries

Session Goals
Session Goals
• Health seeking behaviors
Health seeking behaviors
–Online communities of support
–Technology

• Providing consumer health
information / reference tips
information / reference tips
• Questions

Current Electronic Health Influences
Current Electronic Health Influences

• 40% of MD’s use at least one of
40% of MD s use at least one of
the these tools:
electronic prescribing
electronic medical records
electronic medical records
remote disease monitoring
• 80% f ll
80% of all patients search for
i hf
health information online
www.pewinternet.org/reports/index.asp

Consumer Health Then & Now…
Consumer Health Then & Now…

1972 – Patient Bill of Rights
g
•
2002 – Pew Internet and American Life
•
2006 – “
“Googling for a diagnosis” [BMJ]
f ”
•
2006 – Pew Internet and American Life
•

Looking for Information
Looking for Information
• Pew Internet & American Life survey said the top
Pew Internet & American Life survey said the top
four health topics searched online were:

• specific diseases;
• specific medical treatment;
specific medical treatment;
• diet, nutrition and nutritional supplements;
• and exercise or fitness.
d i fit

Health Seeker Profile
Health Seeker Profile
• 72 % of Females as compared to 51%
72 % of Females as compared to 51%
of Males
• 71% of those between 50 and 64 years
of age as compared to 53% of those
between 18 and 29 years of age *There
are no significant differences in these
are no significant differences in these
percentages when compared by
ethnicity.
ethnicity
www.pewinternet.org/reports/index.asp

Harris Poll
Harris Poll

www.harrisinteractive.com

How do we use the Internet ?
How do we use the Internet ?
• Growing numbers of internet users look for
Growing numbers of internet users look for
health information
– helps them have better conversations with their
helps them have better conversations with their
doctors
• Big impact on the knowledge of patients
Big impact on the knowledge of patients
• The questions they ask their doctors
• Is therefore changing the doctor‐patient
relationship and the practice of medicine.

www.harrisinteractive.com

Google?

• The sight of clinic patients clutching
internet print‐outs fills some doctors
it t i t t fill dt
with dread

Murray E, Lo B, Pollack L, Donelan K, Catania J, White M, et al. The impact of health
information on the internet on the physician‐patient relationship: patient
perceptions. Arch Intern Med. 2003;163:1727‐34

Googling for a Diagnosis

• Article was widely reported in the lay
press
• Doctors/ patients could magically
become diagnosticians simply by using
web search engines?

Tang H, Ng JHK. Googling for a diagnosis—use of Google as a diagnostic aid: internet
based study. BMJ. (published 10 November 2006).


• Study of ‘mystery illnesses’ in New England
Journal of Medicine case records
• Web search used by experts to ‘fish’ for
information on a rare clinical problem
p
before confirming by more rigorous search
methods

Tang H, Ng JHK. Googling for a diagnosis—use of Google as a diagnostic aid: internet
based study. BMJ. (published 10 November 2006)

Google?
• U d i bl th t b th d t
Undeniable that both doctors and d
p
patients use the internet as an
important source of health
information
if i

Cullen RJ. In search of evidence: family practitioners’ use of the Internet for clinical
yp
information. J Med Libr Assoc 2002;90:370‐379
Diaz JA, Griffith RA, Ng JJ, Reinert SE, Friedmann PD, Moulton AW. Patients‘ use of the
Internet for medical information. J Gen Intern Med. 2002;17:180‐5

Googling for Health
Googling for Health
• A recent study showed that almost 19%
A recent study showed that almost 19%
percent of youth surveyed had used a general
word search on Google, Wikipedia or Yahoo to
word search on Google Wikipedia or Yahoo to
find information about their health concerns.
• A total of about 3 percent used Health.com,
Plannedparenthood.com or Mayoclinic.com.

Moreno, MA; parks, MR; Zimmerman, FJ; Brito, TE; Christakis, DA. (2009) Display of
Health Risk Behaviors on MySpace by Adolescents: Prevalence and Associations.
Arch Pediatric Adolesc Med., 163, 37‐34

Googling for Health
Googling for Health
• Teens don’t really know where to
Teens don t really know where to
look or whom to ask online

• Neither do adults – the 2006 Pew
Internet and American Life report
announced the same results
announced the same results


• The authors of the 2006 Pew
Internet and American Life report
point to the need for online
point to the need for online
health resources with offline
referrals or communities that
incorporate peer advice
incorporate peer advice


Information Age Insight:
Information Age Insight:

quot;Medical knowledge is a social
process: The conversations that
h i h
occur around artifactual data are
f
always more important than the
data themselves.
data themselves quot;

Lester, J. Director of Information Technology, Department of Neurology, Massachusetts
General Hospital.

Social Networking
Social Networking
• What is social networking?
at s soc a et o g?
• A social networking Web site provides a
virtual community for people interested in
virtual community for people interested in
a particular subject or just to quot;hang outquot;
together. (PC Magazine)
g ( g )
• MySpace and Facebook are online
community websites that allow friends and
community websites that allow friends and
family to communicate.

Internet Support Communities
• These online groups each devoted to a single
These online groups, each devoted to a single
medical topic (e.g., breast cancer or
depression), usually communicate via postings
depression) usually communicate via postings
on Web‐based forums or electronic mailing
lists.
lists
• Participants share their thoughts, feelings, and
experiences, and ask and reply to questions.
experiences and ask and reply to questions

Ferguson T. Found on the net: What e‐Patients do line: A tentative taxonomy. The
Ferguson Report, No. 9, September 2002 .
www.fergusonreport.com/articles/fr00804.htm


• They exchange information on medical studies
and clinical trials, discuss current treatment
d li i l i l di
options
• They recommend treatment centers and
professionals with special expertise in the
shared condition.

Ferguson T. Found on the net: What e‐Patients do line: A tentative taxonomy. The
Ferguson Report, No. 9, September 2002 .
www.fergusonreport.com/articles/fr00804.htm

• As with “Googling for Diagnoses”, some
As with Googling for Diagnoses some
researchers express concern about
potential for inaccurate info or faddish
t ti l f i t if f ddi h
treatment
• Researchers found there were self‐
correcting mechanisms inherent in many
correcting mechanisms inherent in many
online support groups
Feenberg, A. L., Licht, J. M., Kane, K. P., Moran, K. and Smith, R. A. The online patient
meeting. J Neurol Sci. 1996;139:129–131.


• Over 85% of members on a cancer
forum stated contact with others
f ttd t t ith th
who have undergone similar
experiences was the most beneficial
aspect of the forum
aspect of the forum

Fernsler J. I., Manchester L. J. Evaluation of a computer‐based cancer support
network. Cancer practice 1997;5(1):46‐51.

• Wh t b t
What about consumers of f
health info that don t have
health info that don’t have
a wireline
a wireline device?
• Studies mentioned are
Studies mentioned are
desktop access…

Digital Divide
Digital Divide
• Term has been used to describe
decreased access to information and
communication technologies (ICT),
communication technologies (ICT)
particularly the Internet
–ffor racial and ethnic minorities
i l d th i i iti
– persons with disabilities
– rural populations
l l
– those with low socioeconomic status
Chang Betty L, Bakken Suzanne, Brown S Scott, Houston Thomas K, Kreps Gary L,
Kukafka Rita, Safran Charles, Stavri P Zoe. Bridging the digital divide: reaching
vulnerable populations. J Am Med Inform Assoc. 2004;11(6):448–57

Digital Divide
Digital Divide

• Falling Through the Net: Toward Digital
Inclusion reported that Hispanics and
reported that Hispanics and
blacks are significantly less likely than the
national average to own a computer, to
ti l t tt
have Internet access, and to access the
Internet at home

Falling Through the Net: Toward Digital Inclusion—A Report on Americans' Access to
Technology Tools. Washington, DC: National Telecommunications and Information
Administration, 2000.

Digital Divide
Digital Divide

• Internet access is increasing at all income
levels, but continues to be significantly higher
levels, but continues to be significantly higher
for those with higher incomes.
• For example 89% of households earning more
For example, 89% of households earning more
than $75,000 have Internet access at home
compared with 55% with household incomes
compared with 55% with household incomes
less than $30,000.

Horrigan J. Pew Internet Project Data Memo. Washington, DC: Pew Internet and
American Life, 2004.

Digital Divide
Digital Divide

• Urban use of the Internet
continues to be higher than that
i b hi h h h
in rural areas (65% vs. 48%).
in rural areas (65% vs. 48%).

Horrigan J. Pew Internet Project Data Memo. Washington, DC: Pew Internet and
American Life, 2004.

Digital Divide
Digital Divide

•The number of “wired” seniors is
increasing, with 22% using the
i i ih % i h
Internet, and 66% of wired
Internet, and 66% of “wired”
seniors have used the Internet to
search for health information
Fox S. Older Americans and the Internet. Washington, DC: Pew Internet and
American Life, 2004

Disparities

•Elimination of health disparities
a major goal for next decade
identified in Healthy People 2010
identified in Healthy People 2010

Office of Disease Prevention and Health Promotion. Healthy People 2010:
Understanding and Improving Health. Washington, DC: Office of Disease Prevention
and Health Promotion (ODPHP), United States Department of Health and Human
Services, 2000.

Disparities
• Advisory Commission on Consumer Protection
and Quality in the Health Care Industry
suggested that “telemedicine and similar
innovations … should be assessed as
approaches for improving the access to care
of those facing … barriers to appropriate
care.”

Advisory Commission on Consumer Protection and Quality in the Health Care
Industry. Quality First: Better Health Care for All Americans. Available at:
http://www.hcqualitycommission.gov/final.

Mobile Technologies
Mobile Technologies
• At least 62% of all adults owned a mobile phone in 2001
p
and by 2003, 66% of all U.S. households owned mobile
phones.
• A ith ll
As with all costly technologies, there looms the concern of
tl t h l i th l th f
a digital divide.
• Low‐income families are more likely to have no or
y
suboptimal cell phones.
• However, even among families of
underrepresented minorities, the penetration
rate of this technology is high.

Sax U, Kohane I, Mandl KD. Wireless technology infrastructures for authentication of
patients: PKI that rings. J Am Med Inform Assoc 2005;12:(3):263‐268May‐Jun.

Mobile Technologies
Mobile Technologies
• Mobile/cordless/DECT phone (Digital
Mobile/cordless/DECT phone (Digital
Enhanced Cordless Technology)
• WI FI/WLAN ( i l l l
WI‐FI/WLAN (wireless local area network)
t k)
• WiMAX (Worldwide Inter‐operability for
Microwave Access)
• Handheld PCs, PDAs, messaging
Handheld PCs, PDAs, messaging
devices, electronic organizers and
smart phones
smart phones

Smart Phone
Emulator
http://www.yospace.com/spedemo.html
htt // /d ht l

•Developer edition

•Test your Webpages

Mobile Revolution
Mobile Revolution
• Over 850 million/about 14 percent of the
Over 850 million/about 14 percent of the
world population owns one or more
mobile phones
bil h
• Mobile Internet and wireless
technologies have expanded current
Internet sales into more immediate and
Internet sales into more immediate and
personalized mobile environments

Siau, K., & Shen, Z. (2006, June). Mobile healthcare informatics. Medical Informatics &
the Internet in Medicine, 31(2), 89‐99.

The Mobile Difference
The Mobile Difference
• “Mobile connectivity is now a powerful
Mobile connectivity is now a powerful
differentiator among technology users. Those
who plug into the information and
who plug into the information and
communications world while on‐the‐go are
notably more active in many facets of digital
notably more active in many facets of digital
life than those who use wires to jack into the
internet and the 14% of Americans who are
and the 14% of Americans who are
off the grid entirely.”

Horrigan J. Technology User Types, Mobile, Digital Divide. Washington, DC: Pew
Internet and American Life, Mar 25, 2009

Realities of Health Care Today
Realities of Health Care Today
• Patients are now asked to make
Patients are now asked to make
decisions about their own disease
process.
• Most info consumers do not have the
Most info consumers do not have the
tools to make these kinds of
decisions
• Libraries can help!
Libraries can help!

Scenario
• A familiar woman approaches you while you
A familiar woman approaches you while you
are working on the reference desk at a public
library. She tells you that her mercury fillings
have been poisoning her and then hands you
a article she found on the web. She says that
she is trying to decide whether to remove her
hi i d id h h h
fillings and wants some more information to
help her make up her mind. She finishes by
help her make up her mind She finishes by
mentioning that the “other librarian” was no
help at all.
help at all

Questions
• What are some issues to consider?
• How would you behave in this situation?
y
• What kind of evidence would you use to
answer this question?
answer this question?
• What if this “frequent flyer” doesn’t like the
information you find? What if she comes
information you find? What if she comes
back?

What are some good sources?
What are some good sources?
• Journal of the American Dental Association
Journal of the American Dental Association,
“Dental Amalgam FAQs”

• U.S. Food and Drug Administration, CDRH
Consumer Information, Questions and
Consumer Information “Questions and
Answers on Dental Amalgam”:
http://www.fda.gov/cdrh/consumer/amalgams.html
htt // fd / d h/ / l ht l

As Info Professionals
How Can/Should We
Provide Help?

• General Tips for Reference
Interviews

How Can/Should We
Provide Help?
http://www.nlm.nih.gov/services/guide.html
• Librarians can't answer questions about
individual medical cases or offer medical
advice, because we are not doctors, nurses, or
pharmacists. We can help you find health
information resources.

Challenges of the reference interview
in the context of health information
h fh l h f

Not being familiar with the resources
•
Medical terminology
Medical terminology
•
Knowing how much to ask
•
Using open ended questions
•
Being aware of body language
g y gg
•
Others?
•

How Can/Should We
Provide Help?
• Put together web‐based and
g
print directories of a FEW
consumer health resources

How Can/Should We
Provide Help?
• Practice compassionate
Practice compassionate
reference: Listen, observe,
empathize

How Can/Should We
Provide Help?

• Keep information
Keep information
confidential

How Can/Should We
Provide Help?

•K
Keep personal opinions to
l ii t
yourself

How Can/Should We
Provide Help?
• Anticipate common
Anticipate common
concerns or worries (i.e.,
(
financial repercussions,
physician reprimand)

How Can/Should We
Provide Help?

• Teach basics of sound
internet searching

How Can/Should We
Provide Help?

• Promote

The “Best” Sources of
Consumer Health Information

• Are written for a consumer audience
Are written for a consumer audience
(grade 6 to 8 reading level)
• Are written by medical authorities
• Include references to evidence‐based
Include references to evidence‐based
sources

The “Best” Sources of
Consumer Health Information

• Have a review board
• Are updated regularly
• D ’t i l d d ti
Don’t include advertisements
t

Q
Questions to ask when picking a
p g
resource
• Is the information age‐appropriate?
• Is the information culturally appropriate?
Is the information culturally appropriate?
• Is the information understandable to the
patron?
t?
• Does the information answer the patron’s
questions?
• Is the information accessible? i.e., Can you
increase the font size?

Consumer Health Resources
Consumer Health Resources
•AboutKidsHealth: http://www.aboutkidshealth.ca/

•NIHSeniorHealth: http://nihseniorhealth gov/
•NIHSeniorHealth: http://nihseniorhealth.gov/

•Asian American Health (Includes materials in Chinese,
Filipino and Japanese):
http://asianamericanhealth.nlm.nih.gov/

•General Consumer Health ‐ MedlinePlus:
http://medlineplus.gov/

Subscription Clinical Databases
with Patient Handouts

• ACP PIER
• MD Consult
• Micromedex
• UpToDate
p

Collections

• How do I begin collecting consumer
health materials?
h lh il?

Collections
Considerations

• “Consumer health” not used as LC subject
heading. (hint: try your medical term followed
by “popular works”) i.e., Dentistry–Popular
works.
• Order books for a “general audience”

Collections
Considerations
• Base collections decisions on patron requests
and local demographic information –Ask for
patron feedback
• Hand‐pick –check currency, authority,
references, publisher, etc...
p
• Consider audio/visual materials as well as
print


• Challenge

Controlled
Reference Interview
Vocabulary
V bl
MARC
MeSH Thesauri
Concept Codes
Info Literacy
Info Literacy
Classification
UDC
Verification
Acquisitions
Boolean
Doc Types
Negotiation

Web 2.0 Screencasts
Blogs
Bl AJAX
XML FRBR
CMS
XHTML
Perl
CSS
HTML RSS
MODS
Wikis
JavaScript PodCasts
Library 2.0
Second Life Twitter


• Challenge
• Keeping Up with Technology
Keeping Up with Technology
• Integrating All for Our Users
Integrating All for Our Users

Questions…
Questions

• and Thanks!
and Thanks!

• dl f
dloftus@usd.edu
dd

• Blog: http://blogs.usd.edu/2library/
• Slideshare: http://www slideshare net/dloftus
Slideshare: http://www.slideshare.net/dloftus

Mpla 2009 The Impact Of Technology On Searching For Health Danielle De Jager Loftus

Recomendados

Recomendados

Más contenido relacionado

La actualidad más candente

La actualidad más candente (16)

Destacado

Destacado (20)

Similar a Mpla 2009 The Impact Of Technology On Searching For Health Danielle De Jager Loftus

Similar a Mpla 2009 The Impact Of Technology On Searching For Health Danielle De Jager Loftus (20)

Último

Último (20)

Mpla 2009 The Impact Of Technology On Searching For Health Danielle De Jager Loftus