Wired for Health
Future Research
Sarah N. Keller
Internet Health Communication
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IHC Panel
Definitions
Background
Specific Aims
Risks & Benefits
– internet’s potential
– benefits & risks of IHC
– need for data on effectiveness
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Project Design
Science Panel on IHC
U.S. Dept. Health & Human Services
Aug. 1999
 Office of Disease Prevention &
Health Promotion of U.S. Department
of Health & Human Services
– Convened Science Panel on IHC in 1996
– 14-member, non-Federal experts in
health & technology
– Panel met 10 times over 2-1/2 years
– To summarize risks & benefits of IHC
Science Panel on IHC
Recommended Strategies
Strengthen evaluation and quality
 Improve basic knowledge and
understanding of IHC
 Enhance capacity of stakeholders to
develop and use IHC
 Improve access for all populations
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Science Panel on IHC
Improving Evaluation
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To improve evaluation, Internet
health communicators should:
– integrate evaluation methods into their
products
– disclose info on how applications are
evaluated for effectiveness
– adopt voluntary quality standards
Science Panel on IHC
Improving Basic Knowledge
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Identify gaps in knowledge & priority
areas for research, application
development, demonstration projects
Establish interagency initiative to
coordinate state & federal funding
Set up long-term initiative to monitor
social impact
Monitor trends in policy that affects
Internet health interventions
Ensure privacy
Science Panel on IHC
Enhance Capacity for Use
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Set up clearinghouse
– of public domain objects, tools, raw materials
& info resources
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Academic-industry collaboration
Improve public literacy in health
technology
Health providers should receive IHC
training
Performance indicators
Models
– Process, organizational and financial
Science Panel on IHC
Improve Access
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Public & professional education
– About availability of IHC applications
Public-private initiatives to enhance
access among underserved
 Models
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– For development of applications for
underserved
Definitions
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Integrated (or Internet) health
communication - the interaction of an
individual with/through an electronic
communications device to access or
transmit health information.
Eng & Gustafson, 1999. Science Panel on Interactive Communication
and Health. Washington: US Dept. Health and Human Services.
Definitions (cont’d)
IHC applications – Software or
modules used to interface with users
rather than hardware and
infrastructure.
 IHC (here) does NOT refer to
applications for financial,
administrative or data functions.
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Significance
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Public Health
– disseminating info, health prevention
– online peer support
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New Media Research
– theory development
– understanding processes
Private Marketing
 Public Policy
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– Environmental & Education Goals
Background – Info Tech
1997 - information technology
largest industry in US
 1996 – 33% of growth in GDP
 1988 - 8% of U.S. homes w/ PCs
 1998 - 45% of U.S. homes w/ PCs
 1997 - 50% of users obtained health
info via computer
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Background – Health Care
1990 – 36.5 million Americans in managed
care
 1996 – 67.5 million
 1999
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– 29% of all Americans look for health information
on the Web.
– 70% do so before seeing a health care
professional
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2000 - Health info is 2nd most common use of
WWW
Cyberatlas, 2000; Gervey & Lin, 2000; Sutton, Brown, Wilson
& Klein, 1999; Weiler & Pealer, 2000
Background
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“There are 2 main reasons why
people like to buy prescription drugs
and supplements on the Internet. The
first is that they can be less
expensive, the second that they can
sometimes be ordered nearly
anonymously.”
– Carol Rollins, MS, RD, PharmD, a
pharmacist from Tucson, AZ.
For-profit initiatives
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WellMed Personal Health Manager
– www.behavioralhealthonline.com enables
users to assess, record and improve their
health on a daily basis.
– online health management tools enable
individuals to check their health status, store
personal health records securely, identify risks
and access accurate, information
– WellMed, Inc., founded in 1993, is the leading
provider of online consumer health
management products
Examples: Information
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Relay information –
– Online services, telephone-based systems,
Web sites provide individualized health info
on demand
– Greenfield, et al., 1985 showed access to
health info enabled patients to be more
active participants in their care and led to
better health outcomes
Buhle, et al., 1994; Meyer, 1996; Barry, et al., 1995
Example: Decision-making
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Informed decision-making
– Assist individuals w/ health care decisions
– Shared d-making programs improved
outcomes of surgery
Examples: Risk assessment
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Risk-assessment and health
promotion modules based on
theories of behavior change
– Self-assessment tools can increase
sense of control & focus in a health
situation
– Can increase self-efficacy – most
predictive indicator of patients’
functional status
Strecher, et al., 1994; Ferguson, 1996; O’Leary,
1985
Examples: Online support groups
– Empower patients by increasing connection to
others
• Feeling in control is associated w/ health outcomes
– Enable individuals to share info, give support,
for specific conditions
– Online support groups had positive impact on
breast cancer & AIDS patients
• Brennan, et al., 1995, used electronic support groups
2/week for Alzheimer’s caregivers
• Cocaine-using pregnant women used electronic
services 3/week over 7 mos.
Gustafson, et al., 1993, 1994; McTavish, et al., 1994;Alemi,
et al., 1996.
Example: Online counseling
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Some data suggest patients prefer
online counseling vs. face-to-face
– Recovering substance abuse patients
given access to both, 30% came to
outpatient treatment and 87% accessed
online treatment in 1998
– Postpartum mothers were 8 times more
likely to use electronic support groups
Mosavel, 1998; Alemi, et al., 1996
Examples: Self-care
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Self-care
– Internet has been shown to increase selfmanagement of problems, esp. where access
to care is limited
– Self-care books provided to members of HMO
reduced office visits & specialty referrals
– By preparing patients for visits, interventions
have improved treatment outcome for chronic
diseases
Vickery, et al., 1988; Greenfield & Kaplan,
1985.
Call for Research
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Little is known about how to use the
Internet to promote educational goals including sexual health
Specific Aims
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This project aims to develop a general
strategy for evaluating Web
interventions to prevent STDs and HIV
infection – using the American Social
Health Association teen web site
(http://www.iwannaknow.org) as a case
study.
Research Questions
Research Question #1: What
situations motivate teenagers to come
to the web for sexual health
information? Methods: content analysis,
online survey
 Research Question #2: How do
teenagers search for information on
STDs? What search strategies do they
use? How do they interact with web
information? Methods: user testing
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Research Questions (cont’d)
Research Question #3: How do KAP
variables concerning STD prevention of
teenagers exposed to the ASHA teen
web site compare to teenagers who
have not visited the site? Methods:
national field experiment
 Research Question #4: What is the
most effective way to evaluate a sexual
health web site targeted at teenagers?
Methods: user testing, online survey,
national field experiment
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Risks & benefits
Internet’s potential
 Benefits & risks of IHC
 Need for data on effectiveness
 Theories
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Internet’s Potential
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Internet important sex educator
– Frequent sexual portrayals
– Reticence of other sources of info
More than half of teens learn about
sex from mass media
 Teens report using Internet for
sexual info - although #’s are small
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Kaiser Family Foundation, 1998; Sutton, Brown, Wilson & Klein, 1999
Internet’s Potential
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Unregulated content
– Communication Decency Act of 1996
declared unconstitutional
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Intermediate status between a mass
and interpersonal communication
– Far-reaching, like a mass medium, yet
interactive, like a conversation
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Allows audience segmentation
Benefits of IHC
Individualized health info (tailoring)
 Broader choices for users
 Anonymity (potential)
 Access on demand
 Social support
 Widespread dissemination
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Risks of IHC
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Misinformation & Malpractice
– Although the Internet may improve patients'
access to medical information and other
medical services, Internet-based services
involving the direct sale of medications,
bypass protections normally associated with
conventional medical practices.
– May 1999, Dr Leandro Pasos, an orthopedic
surgeon, accused of unprofessional conduct
by the Washington State Health Department for
prescribing sildenafil (Viagra) over the Internet
to patients he had neither seen nor examined.
Risks (cont’d)
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Malpractice –
– Jan. 2000, Clinton’s new budget proposal
inlcuded seek $10m to hire 100 people and
upgrade computer technology to investigate
websites suspected of illegally dispensing
prescription drags.
– Online drug stores will be required to get
approval from the Food and Drug
Administration (FDA) and to comply with state
regulations on the practice of medicine and
pharmacy
Risks (cont’d)
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Regulation
– The AMA and the National Association
of Boards of Pharmacy are working
together to develop a program to
identify legitimate sites:
• Verified Internet Pharmacy Practice Sites
Risks (cont’d)
Damage to client-provider
relationship
 Violations of privacy
 Wasted resources
 Lack of access
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Barriers to IHC
Provider resistance
 Lack of financial incentives
 Lack of access
 Implementation & maintenance costs
 Lack of data on effectiveness
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Theories Pertinent to IHC
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Outcome expectations
– Social Learning Theory
– Theory of Reasoned Action
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Self-efficacy expectations
– Social Cognitive Theory
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Stages of Behavior Change
Prochaska, et al., 1992; Bandura, 1986; Azjen & Fishbein, 1980;
Bandura, 1977
ASHA Teen Web Site
Employs Theories
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Social Learning Theory & Social
Cognitive Theories – a role model, a young adult with extensive
STD prevention counseling experience, is
used to moderate message board
– listing frequently asked questions from
other teenagers
– using tone of voice appropriate to
teenagers
ASHA Teen Web Site
Employs Theories (cont’d)
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Stages of Behavior Change
– different components of Web site
• question-and-answer format; Internet games
about safe sex negotiation and STD prevention;
message boards; FAQs; etc.
– teens can click on topics most appropriate
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Self-efficacy
– Web diaries designed to give teenagers
confidence in discussing, negotiating and
practicing safe sex
Project Design
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Phase I: content analysis
– provide researchers with coding categories
to evaluate the current site, and framework
for the study.
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Phases II: user testing
– direct observation and self-reports to study
teenagers’ navigational tactics, search
strategies, and page selections
Project Design (cont’d)
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Phase III: online survey
– convenience sample of teenagers (n=200)
– online questionnaire about why they came
to the Internet, and how they arrived
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Phase IV: national field experiment
– test effects on STD prevention knowledge,
attitudes, skills and behavioral intentions
among a national sample of teenagers
(n=1200)
Expected Outcomes
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Develop an evaluation strategy
– which can be generally applied to
educational web sites
– simple, easy-to-use plan
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Dissemination
– online summary of results & study
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Benefits to society
– sharing of results & strategy