Consumer Health Informatics. Deborah Lewis, Ed.D, RN, MPH Associate Professor of Nursing University of Pittsburgh. Definitions….
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Consumer Health Informatics
Deborah Lewis, Ed.D, RN, MPH
Associate Professor of Nursing
University of Pittsburgh
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.
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
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
Communication Strategies that include:
In concert with
Achievement of Personal Health Goals
Improved Health Outcomes
Peaceful End-of-Life Decisions
Family, Friends and Healthcare Providers
Current Health Status
Personal Beliefs and Values
Personal Health Goals
Model for Consumer Health Informatics
Adapted from P. Brennan
Adapted from Hospitals & Health Networks
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
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 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
A 72-year old woman works out a planwith her physician to modify her medication schedule so that on the days she plays bridge she takes her diuretic AFTER the game is over
to Patient Education
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
improved self-care behaviors in Adults with Arthritis
improved adherence to medication therapy in Elderly
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
Skill Development and Decision Support
What has the Internet brought us?
Increased Access to Resources
New Media Possibilities
Concerns about Information Quality
How will we reach those who need
health information most?
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
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-to-family communication for family members of children with cancer
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.
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 text-based messages and upload external files (for example, images, video, sound files, word processing documents, or spreadsheets)
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.
The one person who had no computer used the Internet often at the public library and carried all the information with her.
'Understand me and my tumor.
Neither one of us reads your textbooks.'