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Consumer Health Informatics
Deborah Lewis, Ed.D, RN, MPH
Associate Professor of Nursing
University of Pittsburgh
Definitions….
Consumer health informatics is the branch of
medical informatics that analyses consumers’
needs for information; studies and implements
methods of making information accessible to
consumers; and models and integrates
consumers’ preferences into medical
information systems.
Eysenbach, 2000
Consumer health information (CHI) is information
on health and medical topics provided in response
to requests from the general public, including patients
and their families.
In addition to information on the symptoms, diagnosis
and treatment of disease, CHI encompasses information
on health promotion, preventive medicine, the
determinants of health and accessing the health
care system.
Medical Library Association, 2000
Consumer Health Informatics is defined as the
integration of consumer health information
and information technology in an environment
of shared healthcare decision-making that
supports effective self-health action.
Lewis and Friedman, 2000
Inputs
Integrating
Process
Family, Friends and
Healthcare Providers
Accurate
Health
Information
Current
Health Status
Communication
Strategies that
include:
Information
Technology…
In concert with
Human
Interventions
Consumer
Outputs
Informed Consumer
Achievement of Personal Health Goals
Improved Health Outcomes
Peaceful End-of-Life Decisions
Personal Beliefs and Values
Personal Health Goals
Prior Understanding
Model for Consumer Health Informatics
What has caused recognition of the
importance of
Consumer Health Informatics
• Changing values toward patient autonomy
and self-care
• Changing cost models
• Withdrawal or change in previouslydelivered service
• New opportunities for access and
connectivity
Adapted from P. Brennan
The Possibilities
• For the consumer: distributed systems make it
possible for information delivery to transcend
the hospital/clinic environment when the
“teachable moment” most often occurs. New
media will make access more affordable.
• For the educator/clinician: The use of webbased technologies provide for easy upgrades
of content and access to multiple information
sources.
• Technology can provide a vehicle for
basic information and supportive
interaction (Internet).
• Technology-based Media can model
non-linear processes.
• Computers are available whenever the
patient is available.
(if the patient has access)
Characteristics of Today’s
Healthcare Consumer
Today’s Health Consumer
• Busy with little free time
• Well educated
• Less intimidated by physicians
• Want choices
• Eager to take control or play a
major role in their own health
Adapted from Hospitals & Health Networks
Where Do People get
Health Information?
Family
Physician
0
5
10
Physician
Library
Internet
Alt Med Sources
Classes
15
20
25
Clinic/Hospital
News
Hotlines
Family/Friends
Other
30
35
40
Public Health Nurse
Health Magazines
Reference Books
School
45
They want…
• Comprehensible, relevant
knowledge
• Communication with peers and
professionals
• Personal health information
management tools
Applications for
Consumers
• Medical Information
• Drug Information
• Storage of Personal Medical
Records
• E-Mail to Physicians
• Body Mass Index Calculators
• Health Risk Assessment
A 32-year old mother of two living in
Wausau, recently
diagnosed with Ovarian Cancer, locates and
enrolls in a
clinical trial lead by a University-affiliated
oncologist in
her community.
A single father
of a 7 year old child learns
from her pediatrician that the
child has Crohn’s disease. The
father reviewed his child’s
records, including laboratory
tests and physician notes over
the web from his home
computer, and was also able
to look at health information
from major research
universities.
A married couple, their
three children, and the
wife’s mother live on a 200
acre farm and get weekly
updates on ground water
quality and contamination
from their state’s
Health Alert Network.
The Health Planning
Council of a medium size
town conducts a
resource assessment and
concludes that their
community lacks
services for
disenfranchised people
(unemployed, uninsured,
transients, migrant
workers, racial and
ethnic minorities
A 72-year old woman
works out a plan
with her physician to
modify her
medication schedule
so that on the days
she plays bridge she
takes her diuretic
AFTER the game is
over
The Contexts of Care
• Living Environment
– Homes
– Communities
• Social Environments
– Families
– Cultural Groups
• Psychological Environments
– Illness representations
– Human Information Processing
• Technological Environments
Where do people keep
health information?
Computer-based Approaches
to Patient Education
Knowledge Transfer
improved
improved
improved
improved
knowledge in Children with Asthma
knowledge in Elderly with Arthritis
knowledge in Adults with Diabetes
medication knowledge in Adult psychiatric patients
Health Behaviors
improved self-care behaviors in Adults with Arthritis
improved adherence to medication therapy in Elderly
Clinical Outcomes
reduced fat intake and decreased HgbA1c in Adults with Diabetes
decreased HgbA1c in Adults with Diabetes
decreased hospital admissions in Adults with Asthma
decreased plasma cholesterol in Adults with Hyperlipidemia
Relationships with Care Providers
• Patients prefer live interaction for
some types of communication
Skill Development and
Decision Support
• Computer-based technologies are used
effectively to transfer self-care
management skills in diabetes.
Social Factors
• Rural patients and patients from low
socio-economic backgrounds respond
well
• Gender does not make a difference
Persons with Disabilities
• Virtual learning environments enhance
interaction, diminish feelings of isolation
and improve self-esteem
Literacy Considerations
• Use of multimedia make programs more
understandable by persons with limited
reading ability.
• One study found that patients who were
less well-educated benefited most from
an interactive video program.
Developmental Considerations
• School age children responded
positively and had improved health
outcomes (n=6)
• Elderly clients with little prior computer
experience have improved knowledge
scores and reported satisfaction with
CBPE (n=4)
The Internet
Growth of the Internet
• 17 million Americans use the Web
to search for Health Information
–
–
–
–
Average age 41
53% are female
Average annual income 61K
81% have a college degree
http://www.cyberdialogue.com/pdfs/articles/intel.pdf
What has the Internet brought us?
Convenience
Increased Access to Resources
New Media Possibilities
Concerns about Information Quality
“Information Overwhelmus”
Issues of Information Overload and
Information Quality
• Amount of Information is Overwhelming
• Increased Quantity of Information may
not be an increase in Quality
• There is an ongoing need for new
approaches to assist Consumers in
locating Information that is Accurate,
Understandable and Personally
Meaningful
How will we reach those who need
health information most?
Aging population
18-25% who are poor and uninsured
9 million Americans who are functionally illiterate.
(National Adult Literacy Survey, 1993)
Those without access: The digital divide
Caring Place
Communication
and Information
resource for
Family
Caregivers
(Parents) of
Children with
Cancer
“Caring Place”, will provide individualized clinical
information, patient-centered information resources,
and access to online family-provider and family-tofamily communication for family members of children
with cancer
Health Almanac
The Health Almanac module includes a framework for summarizing the child’s
clinical record. Specific information for the “Caring Place” will include the
chemotherapeutic protocol, lab values and radiology reports. Information
resources (found in the Information Library) will assist the parents in
understanding what their child’s health information means. A calendar function
will also be available to allow parents to track appointments.
Gathering Place
Online access to discussion groups within self-designated
communication groups. They will be able to decide how
they wish to participate. Each family communication group
will have the opportunity to access their child’s
participating healthcare providers or other family
caregivers who are participating in the study.
The discussion group participants will be able to post textbased messages and upload external files (for example,
images, video, sound files, word processing documents,
or spreadsheets)
Information Library
The Information Library module is under development. It will contain specific
information for pediatric oncology patients. These information resources will
be patient-centered and will include traditional patient education materials
currently being use in the oncology clinic at Children’s Hospital, Pittsburgh.
The traditional information resources are primarily paper-based and have
been developed by oncology clinic staff at Children’s Hospital of Pittsburgh.
We will include those resources that apply directly to treatment, side-effects,
clinical tests, and social support.
Links will be provided to selected
external web-based resources.
Additional paper-based resources
will remain available from the
information shelves in the patient
waiting areas of the Oncology Clinic.
Review of the Prototypes
Family Caregivers Internet Use
n=40
• 83% access Internet from Home
• 14% access Internet from Work
• 72% find the information they are
looking for “most of the time” or always
• 97% have searched for information
related to their child’s diagnosis
• 64% searched for information regarding
new medications
• 64% searched for answers to
unanswered questions after MD visits
• 78% use search engines
• 39% use e-mail to communicate
with care providers
• 72% have not participated in
online support groups
• 61% are concerned about the
security of electronic health
information
• 63% question the quality of the
information they find
Comments from Parents
• The website should contain
– Current valid and reliable information
resources
– Easy to search
– Information regarding clinical trials
– Access to e-mail with healthcare
providers
• “The Internet is my only way of
fighting this disease”
Usability Testing
• 17 parents
• Average age 42
• Time since diagnosis 1 wk – 4.5 yrs average
1.25 years
• 16 have computers
• 15 have Internet access
• Use ranged from never (n=2) to daily (n=8)
The one person who had no computer used the
Internet often at the public library and carried
all the information with her.
User testing comments
•
•
•
•
Need a disclaimer about outside sites
Need a place to ask questions
Need drug information
Information needs to be tailored to your
child
• Need to be able to organize all the
information they give you
• Need chat rooms for kids and teens
“Not everyone is rationale at first,
the Internet may not be the best
choice for information seeking”
Personal Experience: First
Questions
•
•
•
•
•
•
•
What does this diagnosis mean?
How will this change her life?
Will her normal development change?
Will she still be able to go to school?
More information about the drug?
What was the name of that drug?
How will I get help when I go home?
First Internet Encounter
http://www.epilepsyfoundation.org/answerplace/Life/children/
What I’ve learned
• The Internet can cause great stress
• It is not always easy to find the Information you are
seeking
• The .gov sites don’t often appear in searches
• The Healthcare team is the best resource for
individualized information but they are not always
available
• Rationale thought leaves you when your child is
diagnosed with a serious illness
• There is much work to do in the area of Consumer
Health Informatics
• We need to leverage these new technologies in ways
that will meet consumer and healthcare providers needs
Top Consumer Health Information Web
Sites
• AMA Health Insight: On-Line Health
Information for Everyone
http://www.ama.org
• Centers for Disease Control and Prevention (CDC)
http://www.cdc.gov
• Healthfinder TM
http://www.healthfinder.gov
• National Cancer Institute
http://www.cancer.gov/cancerinfo
Top Consumer Health Information Web
Sites
• HealthWeb
http://www.healthweb.org
• HIV InSite
http://hivinsite.ucsf.edu
• Mayo Clinic Health Oasis
http://www.mayohealth.org
• MEDLINEplus
http://medlineplus.nlm.nih.gov/medline
plus
Top Consumer Health Information Web
Sites
• National Women's Health Information
Center http://www.4women.gov
• NOAH: New York Online Access to Health
http://www.noah-health.org
• Oncolink:University of Pennsylvania
http://www.oncolink.upenn.edu
• American Cancer Society
http://www.cancer.org
Top Consumer Health Information Web
Sites
• Clinical Trials
http://www.clinicaltrials.gov/
• Oncology Nurses Society
http://www.ons.org
• Leukemia Society
http://www.leukemia.org
'Understand me and my tumor.
Neither one of us reads your textbooks.'
http://www.mskcc.org/mskcc/html/3149.cfm