Consumer Health Informatics

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Consumer Health Informatics

• Deborah Lewis, Ed.D, RN, MPH
• Associate Professor of Nursing
• University of Pittsburgh

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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

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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
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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
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Inputs
Family, Friends and Healthcare Providers
Accurate Health Information
Current Health Status    
Personal Beliefs and Values Personal Health
Goals Prior Understanding  
Model for Consumer Health Informatics
 
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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 previously-delivered
  service
• New opportunities for access and connectivity

Adapted from P. Brennan
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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 web-based
  technologies provide for easy upgrades of content
  and access to multiple information sources.

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• 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)

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Characteristics of Todays Healthcare Consumer
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Todays 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
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Where Do People get Health Information?
Family
Physician
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They want

• Comprehensible, relevant knowledge
• Communication with peers and professionals
• Personal health information management tools

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Applications for Consumers

• Medical Information
• Drug Information
• Storage of Personal Medical Records
• E-Mail to Physicians
• Body Mass Index Calculators
• Health Risk Assessment

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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 married couple, their three children, and the
wifes mother live on a 200 acre farm and get
weekly updates on ground water quality and
contamination from their states 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 single father of a 7 year old
child learns from her pediatrician that
the child has Crohns disease. The
father reviewed his childs 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 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
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The Contexts of Care

• Living Environment
• Homes
• Communities
• Social Environments
• Families
• Cultural Groups
• Psychological Environments
• Illness representations
• Human Information Processing
• Technological Environments

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Where do people keep health information?
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Computer-based Approaches to Patient Education
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Knowledge Transfer improved knowledge in Children
with Asthma improved knowledge in Elderly with
Arthritis improved knowledge in Adults with
Diabetes improved 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
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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.

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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

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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.

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Developmental Considerations

• School age children responded positively and had
  improved health outcomes (n6)
• Elderly clients with little prior computer
  experience have improved knowledge scores and
  reported satisfaction with CBPE (n4)

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The Internet
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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.p
df
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What has the Internet brought us? Convenience Inc
reased Access to Resources New Media
Possibilities Concerns about Information
Quality Information Overwhelmus
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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

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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
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Caring Place

• Communication and Information resource for
  Family Caregivers (Parents) of Children with
  Cancer

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Caring Place, will provide individualized
clinical information, patient-centered
information resources, and access to online
family-provider and family-to-family
communication for family members of children with
cancer
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Health Almanac
The Health Almanac module includes a framework
for summarizing the childs 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 childs
health information means. A calendar function
will also be available to allow parents to track
appointments.
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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 childs participating
healthcare providers or other family caregivers
who are participating in the study. The
discussion group participants will be able to
post text-based messages and upload external
files (for example, images, video, sound files,
word processing documents, or spreadsheets)
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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 Childrens Hospital, Pittsburgh. The
traditional information resources are primarily
paper-based and have been developed by oncology
clinic staff at Childrens 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.
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Review of the Prototypes
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Family Caregivers Internet Use n40

• 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 childs diagnosis
• 64 searched for information regarding new
  medications
• 64 searched for answers to unanswered questions
  after MD visits

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• 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

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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

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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 (n2) to daily (n8)
• The one person who had no computer used the
  Internet often at the public library and carried
  all the information with her.

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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 teensNot everyone
  is rationale at first, the Internet may not be
  the best choice for information seeking

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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?

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First Internet Encounter
http//www.epilepsyfoundation.org/answerplace/Life
/children/
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What Ive learned

• The Internet can cause great stress
• It is not always easy to find the Information you
  are seeking
• The .gov sites dont 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

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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 Institutehttp//www.cancer.gov/ca
  ncerinfo

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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

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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
• OncolinkUniversity of Pennsylvania
  http//www.oncolink.upenn.edu
• American Cancer Societyhttp//www.cancer.org

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Top Consumer Health Information Web Sites

• Clinical Trials http//www.clinicaltrials.gov/
• Oncology Nurses Societyhttp//www.ons.org
• Leukemia Society http//www.leukemia.org

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'Understand me and my tumor. Neither one of us
reads your textbooks.'
http//www.mskcc.org/mskcc/html/3149.cfm