A personal weapon in the war on chronic illness

A Personal Weapon In the
War On Chronic Illness:
Expert Patients and Their Use
of Health Information
Teresa Hartman, MLS
Diane Tobin Johnson, MLS, Ph.D.
Medical Library Association Annual Meeting,
Philadelphia, PA May 20, 2007

Why This Presentation Is Important
Trends from 1960 onward show that patients and
their families want more, not less, information
about cancer (3,8)
Research shows that people use a variety of
sources to gather information including personal
sources such as friends and neighbors (4)
Eight of 10 Americans now search online for health
information (6)
People find it more comfortable to use personalized
information - it is not sloppiness on their part
Librarians need to consider how to provide not only
accurate information, but information online in a
more personalized format
Hartman & Johnson, 05/20/07

Who are health information
searchers?
According to Pew Internet Life report (6)
8 in 10 go online for health information in all
adult cohorts (18-70+)
36% look for information for themselves
48% look for information for others
8% look for both themselves and others
66% of health information seekers begin at
search engines
72% begin at two or more sites
Blogs don’t frequently show up in search engines, but
that may change


The problems associated with lay
provided information are legion…
Professional assessment of quality and accessibility of health
information on the Internet is mixed. For example:
Berland et al. (2001) looked at 25 E-health websites (2)
45% of English-language sites accurate
22% of Spanish-language sites accurate
Both types required high school or above reading ability
Friedman et al. (2004) looked at 55 cancer websites (5)
64% required college-level reading ability
Hargrave et al. (2003) looked at 22 pediatric neurology
sites (7)
59% rated “poor” for content
Most required college-level reading ability

There are success stories with
lay-provided information
There are successes with lay-provided
information offline:
Chronic Disease Self-Management
Program
Stanford Patient Education Research
Center, Kate R. Lorig, primary investigator
Expert Patient Programme, National
Health Service, United Kingdom


The driving forces behind expert
patient programs
Population shifts, health expenditures drive
interest in expert patient programs
Chronic disease incidence increases as
population ages (14)
By 2030, 20% of Americans (72 million) will be 65
or older
Expense associated with chronic disease
increases
70% of health care costs are associated with
chronic disease (14)


“Big three” chronic diseases

Heart disease, diabetes, and cancer (14)
cause 7 out of every 10 deaths in the
US
affect the quality of life for 90 million
Americans


Roles of Information
Prevention, treatment, and survival
Six functions of information for cancer
patients (12)
- to gain control
- to reduce anxiety
- to improve compliance
- to create realistic expectations
- to promote self-care and participation
- to generate feelings of safety and
security


Patients use the web to find that
information
Even doctors acknowledge the
importance of “additional resources” (8):
“In addition to better communication and
counseling skills by oncologists,
patients need additional resources to
satisfy information needs and to achieve
greater participation in their care.”


So, what is an expert patient?
Expert patients (1):
- know the quality of their lives is primarily up
to them
-believe they can exert significant control over
their lives
- are determined to live a healthy life despite
their chronic condition
-are realistic about the impact of their disease
-have worked out what services exist and
utilize those services appropriately


Foundation of expert patient
programs
Work in the US and the UK is founded on:
Theories of social learning and self-
positive role models
Includes the belief that one can
influence outcomes
Ideal participants have willingness to
take responsibility and take action


Critical characteristics of expert
patients

seeking and using information is part of
influencing outcomes
sharing information is part of being a
positive role model
a significant part of seeking, using, and
sharing does and will take place
online(1)


Why Look at Bloggers for Expert
Patients
Sheer numbers: 79.2 million blogs are being
tracked by Technorati (13)
Many types of blogs and blogs are evolving
(9):
personal journals
ffilter blogs
corporate blogs
professional knowledge blogs
civic citizen blogs


People experiencing severe
illness often write personal
journal blogs to:
communicate with their support group
keep track of their own understanding of
their condition
get feedback from others
actively link with resources


Spotting an Expert Patient’s Blog
Expert patients blogs:
have a sense of audience that goes
beyond family and friends
show evidence of actively seeking a
variety of information from a variety of
sources
talk about treatments beyond their own
course of treatment
share links that could be useful to others

Methodology
We used grounded theory to examine a
series of blogs written by cancer
patients and their families,
distinguishing personal journal blogs
from expert patient blogs.


What we looked for
How did the blogger :
handle the “personalizing” of the blog?
make personal connections?
start and follow a trail of thought within the
blog?
Include or exclude reader’s comments and
responses?


Serving Bloggers’ Information
Needs
Librarians continue and expand use of
social networking software to
personalize information service &
resources according to patron groups
Create liaison positions to serve specific
groups of health information consumers


Customer relationship building

Librarians should consider using social
networking software in addition to their
other online methods of building
relationships with their customers.
Relationships can be better built
through blogs than web pages (9)


Future Research
studies that assess the impact of information
on quality of life for cancer patients
studies involving measures of self-efficacy and
people who write expert patient blogs
studies that compare lay-led self-management
group results with results of blog users
studies that assess the quality of information
on expert patient blogs and the use of links to
high-quality cancer information resources


quot; I'm personally convinced that people facing an
illness/disability (as well as spouses, parents,
families, etc.) want health information online
not just as it can be downloaded or shoveled
out, but within the context of a supportive
community of peers (sort of a live Consumer
Reports team analysis).”
-Ed Madara, M.S.
American Self-Help Clearinghouse
St. Clare’s Hospital, New Jersey (11)


Bibliography
References
Bellingham C. (2003). Time to mobilise expert patients' skills.
1.
[Electronic version]. The Pharmaceutical Journal, 270(May),
743-744. Retrieved April 26, 2007, from Ebscohost database.
Berland, G.K., Elliott, M.N., Morales, L.S., Algazy, J. I.,
2.
Kravitz, R.L., Broder, M.S., Kanouse, D. E., Munoz, J.A.,
Puyol, J.A., Lara, M., Watkins, K.E., Yang, H., & McGlynn,
E.A. (2001). Health information on the internet: Accessibility,
quality, and readability in English and Spanish. [Electronic
version]. Journal of the American Medical Association,
285(20), 2612-2621. Retrieved April 26, 2007, from
Ebscohost database.
Cassileth BR, Zupkis RV, Sutton-Smith K, March V. (1980).
3.
Information and participation preferences among cancer
patients [Abstract]. Annals of Internal Medicine, 92(6) 832-
836. Hartman & Johnson, 05/20/07

Bibliography
Dervin, B. (2005). Sense making studies. Retrieved April 24,
4.
2007, from http://communication.sbs.ohio-state.edu/sense-
making/
Friedman, D.E., Hoffman-Goetz, L. & Arocha, J.F. (2004).
5.
Readability of cancer information on the internet. [Electronic
version]. Cancer Education, 19(2), 117-122. Retrieved April
26, 2007, from Ebscohost database.
Fox, S. (2006). Online health search. Washington, D.C.: Pew
6.
Internet & American Life Project. Retrieved April 26, 2007,
from http://www.pewinternet.org/


Bibliography
Hargrave, D. Bartels, U., Lau, L., Esquembre, C. & Bouffet, E.
7.
(2003). Quality of childhood brain tumour information on the
internet in French language. [Abstract]. Bulletin for Cancer,
90(7) 650-655. Abstract retrieved April 26, 2007, from
MEDLINE database
Jefford, M., & Tattershall M. Informing and involving cancer
8.
patients in their own care.(2002). [Electronic version]. The
Lancet Oncology, 3(10), 629-629. from MD Consult database.
Kelleher, T., and Miller, B. M. (2006). Organizational blogs
9.
and the human voice: Relational strategies and relational
outcomes. [Electronic version]. Journal of Computer-Mediated
Communication, 11(2), 395-414. Retrieved April 24, 2006


Bibliography
Lorig, K.R., Sobel, D.S., Stewart, A.L., Brown, B.W., Bandura,
10.
A., & Ritter, P. (1999). Evidence suggesting that a chronic
disease self-management program can improve health status
while reducing hospitalization: A randomized trial. Medical
Care, 37(1), 5-14.
Madara, E. (2007). In Hartman T. email communication: .
11.
Retrieved May 10, 2007,
Mills M.E., & Sullivan K. (1999). The importance of
12.
information giving for patients newly diagnosed with cancer: A
review of the literature. [Electronic version]. Journal of Clinical
Nursing, 8(6), 631-642. Retrieved April 24, 2006, from
Ebscohost database.
Technorati: About us. Retrieved April/24, 2007, from
13.
http://technorati.com/about/
Wan, H., Sangupta, M., Velkoff, V.A., & DeBarros, K.A.
14.
(2005). 65+ in the United States: 2005. Washington, D.C.:
U.S. Government Printing Office.

A personal weapon in the war on chronic illness

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