Transcript Academic Medicine and Managed Care Forum

The online healthcare revolution and
the rise of e-patients
and e-caregivers
Internet Librarian 2003
Lee Rainie – Director
November 3, 2003
“Oh, like you know something
the internet doesn’t know.”
The 20th Century model
the clueless,
isolated, doctordependent patient
The 21st Century model
the net-savvy,
well-connected,
doctor-independent
end-user
Un-Hippocratic
I SWEAR … I will impart a knowledge
of the Art to my own sons, and those
of my teachers, and to disciples
bound by a stipulation and oath
according to the law of medicine,
but to none others.
Being online is the norm
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Adults
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Pew Internet & American Life Project / Pew Research Center surveys
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Portrait of health seekers




80% of internet users or 93 million
American adults – 6-8 million on any given
day
14 million American teenagers
Online women more than online men (72%
vs. 51%) and girls more than boys
Middle aged (30-64) more than the young
or the old
Key ‘demographic’ trait 1:
Health status affects intensity of search
Health seeker population
The well
Their traffic report
Newly diagnosed
Chronically ill
(Institute for the Future study, 2001)
Key ‘demographic’ trait 2:
Who they searched for affects timing and purpose
70
60
50
40
30
20
10
0
Before a doctor visit
After a doctor visit
For myself
Unrelated to a visit
Instead of a visit
For someone else
What e-patients do - 1
Tentatively diagnose their own diseases
 Confirm their doctor’s diagnosis and
suggested treatments
 Check their doctors’ credentials
 Research all available treatment options
– not just those recommended by doctor

What e-patients do - 2
Give themselves a crash course on a
specific medical condition when they (or
a loved one) is diagnosed
 Exchange information and support with
with other patients with the same
disease
 Obtain online second opinions
 Explore and sign up for clinical trials

Why they like Internet searches



93% of health seekers say it is important
that they can get health information when
it is convenient for them
83% of health seekers say it is important
that they can get more health information
online than they can get from other
sources
80% of health seekers say it is important
that they can get this information
anonymously, without having to talk to
anyone
How e-patients start searching
Most e-patients start at a search
engine like Yahoo or a general site
like AOL – not a medical site – and
visit two to five sites
 Few have one favorite health site

How e-patients gather info
Most: Scattershot searches in
response to a diagnosis
 Some: Targeted email health news or
medical updates
 Few: Online support groups or email
lists for people concerned about a
particular health or medical issue

70
60
50
40
30
20
10
0
The information health
seekers get online
Searches are successful



Eight in ten health seekers find the
information they look for online at least
most of the time
More than half of search engine users
found information within the first three
sites they visited
Most health seekers say they had never
heard about the Web sites they ended up
consulting before they began the search
How e-patients assess quality
Most trust the familiar
 Most distrust commercialism
 2 in 5 check the source
 1 in 3 check it out with a medical
professional

Three types of e-patients
Vigilant: 25% “always” check the
source, date, and privacy policy of a
health Web site
 Concerned: 25% check “most of the
time”
 Unconcerned: 50% “only
sometimes,” “hardly ever,” or
“never” check

Searches affect health decisions


61% of health seekers say information
they found on the Web has improved the
way they take care of themselves
68% said that their last online search
affected their decisions about:
- how to treat an illness
- whether to visit a doctor
- whether to ask new questions or get a
second opinion
Pitfall 1: Bad information is
dangerous
RAND/CHCF: Online advice is
incomplete and hard to understand –
esp. for Spanish readers
 NEJM: Americans receive about half
of recommended medical care

Pitfall #2: Privacy concerns





Consumers have an expectation of privacy
89% of health seekers are concerned that
a health-related Web site might sell or give
away information about what they did
online
85% are concerned that an insurance
company might change coverage
52% are concerned their employer might
find out what health sites they have visited
63% think that putting medical records
online is a bad thing
Underlying world view,
Industrial Age medicine
medical
science
All other
possible
inputs from
people and
publications
PHYSICIAN
non-MD Staff
patient
Underlying world view,
Information Age medicine
my online
support
groups
my online
patienthelpers
my favorite
health sites
my primary
doc
my specialist
doc
NET-SAVVY
PATIENT
my other
health experts
my search
engine
other
qualityware
& communityware self-helpers
my online
docs
Contact me:
Lee Rainie
[email protected]
www.pewinternet.org
202.296.0019