Empowering Communities with
Empowering Communities with
Direct Access to Health Data
Direct Access to Health Data
Christina Zarcadoolas, PhD, Wendy Vaughon, MPH
Christina Zarcadoolas, PhD, Wendy Vaughon, MPH
With Sara J. Czaja, PhD,
With Sara J. Czaja, PhD,
Maxine L. Rockoff, PhD, Joslyn Levy MPA
Maxine L. Rockoff, PhD, Joslyn Levy MPA
NIH R21 1 R21 CA133487-01A2 SBM
April 28, 2011 April 28, 2011
eHealth Landscape
eHealth Landscape
The Health IT in the American Recovery and Reinvestment
Act, the Health Information Technology for Economic and Clinical Health (HITECH) - $19.2 billion to encourage
adoption of electronic health records.
Institute of Medicine (IOM) (2001) called for all physicians
to use electronic prescribing tools by the year 2010
Meaningful Use - USDHHS - The Office of the National
Coordinator for Health Information
http://healthit.hhs.gov/portal/server.ptopen=512&objID=2996&mode
http://healthit.hhs.gov/portal/server.ptopen=512&objID=2996&mode
=2
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3
Overview Current Study
Overview Current Study
What are peopleWhat are people’’s perceptions of portals s perceptions of portals ––
utility, value & likelihood to use
utility, value & likelihood to use
Identify readability & navigabilityIdentify readability & navigability-- usabilityusability
Focus on 3 common functions of EMRs:Focus on 3 common functions of EMRs:
Medication managementMedication management
Lab/test resultsLab/test results
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Deadly Mismatches in US
Deadly Mismatches in US
50% >50% > adults are low adults are low health literatehealth literate
50%50% > are low literate > are low literate -- read @ < 8read @ < 8thth grade grade
Reading/Writing/Numeracy
Reading/Writing/Numeracy
(
(NALS 1993 & NAAL 2003)NALS 1993 & NAAL 2003)
Most health information written @ 10th Most health information written @ 10th -
-12th grade level / website -12th
12th grade level / website 12th -- 17th 17th grade level
grade level
80%80% have had difficulty understanding have had difficulty understanding
some health information
What is health literacy?
What is health literacy?
TheThe wide rangewide range of skills, and of skills, and
competencies that people develop over
competencies that people develop over
their
their lifetimeslifetimes to to seek out, comprehend, seek out, comprehend, evaluate, and use health
evaluate, and use health information and information and concepts to make informed choices,
concepts to make informed choices,
reduce health risks, and increase quality
reduce health risks, and increase quality
of life
of life……..
(Zarcadoolas, Pleasant & Greer, 2003; 2006)
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Methods
Methods
Initial task analysis, readability & health Initial task analysis, readability & health
literacy load analysis of a wide range of
literacy load analysis of a wide range of
portals (reviewed 30)
portals (reviewed 30)
Focus groups with consumersFocus groups with consumers
Usability testing of 3 portals with Usability testing of 3 portals with ≈≈ 55 55
consumers using
consumers using ““dummydummy”” patient profilespatient profiles
Analyze data Analyze data -- develop preliminary best develop preliminary best
practice guidelines for design
Adapting and Developing Survey Tools
Adapting and Developing Survey Tools
Adapted validated survey questions from a number of sources
(including HINTS and Czaja et al) to better address our population; Using lower literacy questions and answer choices
more reflective of our community. For example
HEALTH INFORMATION SEEKING (HINTS 2007 CATI Instrument (English) HC-02.
The last time you looked for information about health or medical topics, where did you go first?
Books... Brochures, Pamphlets etc...
Cancer Organization ... Family ... Friends/Co-workers... Healthcare Provider... Internet... Library... (more)
Focus Group Participants
Focus Group Participants
’
’
Experience
Experience
with IT (N=28)
with IT (N=28)
• 100% had computer experience • 66.7% had a home computer
• 93% had experience with the Internet
• 75% (of users) had Internet access at home • All participants used a cell phone, 57% had a
smart phone they used occasionally to frequently
Common Themes Across Groups (a)
Common Themes Across Groups (a)
Consumers unanimously very interested in patient
accessible EMRs although most didn’t have access to one.
Age associated with use of social media/technology. Physical access to technology not a primary barrier.
Many participants accessed the internet wirelessly using
mobile technology.
“This is my laptop.”
High interest in lab/test results, but reviewing results,
posed unusually high reading and numeracy demands “If I could read it and understand it [I would use it] … I
Common Themes Across Groups (b)
Common Themes Across Groups (b)
Want health education specific to their
condition in their records
Want ‘just-in-time’ links to sources that use
understandable language.
“Web MD … that thing is so hard … it
doesn’t really break it down where the average person can understand …
some of the translation is in doctor terms … the average person that’s looking at it gets lost.”
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Access empowers
“Information is power.”
“It all boils down to the same thing … a
lot of people don’t take charge of their health because they don’t … remember to take care of themselves and a lot of times they don’t even know at what age they should be checking for what
things.”
Common Themes Across Groups (c)
Few Privacy/Security Concerns
Few Privacy/Security Concerns
A few had privacy concerns
“It might just make them [children] more
hesitant to disclose things to their doctor if they know that their parents can view this … might just make them not want to say things that they don’t want their parents to know”
Some had security concerns.
“I’m a little leery about putting my information
on these internets. I mean, I don’t even do banking on the internet.”
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Discovery, like surprise
Discovery, like surprise
…
…
Patients / consumers are looking to see
the same kinds of IT design & interfaces that they have come to use in daily life.
Mouseovers, wikis definitions, video, IM, etc.
“… Put everything out front where I
can understand it … it’s like working
on Facebook or Hotmail, everything
is in plain sight and I can deal with
that and most people like that.”
Task Analysis, Readability,
Task Analysis, Readability,
Health Literacy Load Analysis
Subtasks/ Subtasks/ steps steps Sensory/ Sensory/ Perceptual Perceptual Demands Demands Cognitive Demands
Cognitive Demands Literacy/Literacy/
Readability Demands Readability Demands Response Response Execution Execution Demands Demands Access Access correct correct med info med info Locate Locate /identify /identify medication; medication; locate dosage locate dosage information information
Read labels , discriminate
Read labels , discriminate
among types of meds; Ignore
among types of meds; Ignore
irrelevant info on page;
irrelevant info on page;
Comprehend dosage info
Comprehend dosage info
Comprehension of
Comprehension of
unfamiliar/difficult words;
unfamiliar/difficult words;
discriminate name from
discriminate name from
instructions; read instructions; read directive language directive language Ability to scroll Ability to scroll on page on page Locate Locate medication medication instruction instruction information information
Ignore irrelevant information
Ignore irrelevant information
and discriminate between
and discriminate between
dosage & instruction;
dosage & instruction;
Discriminate between various
Discriminate between various
meds; Read/ understand med
meds; Read/ understand med
Familiarity with symbols
Familiarity with symbols
and indexical clues (Rx)
and indexical clues (Rx)
Comprehend Comprehend abbreviations and abbreviations and sentence fragments sentence fragments --““I I
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Health Literacy Load Analysis
Common Health Literacy Barriers Found in
Common Health Literacy Barriers Found in
EMRs
EMRs -- Readability/Task Analysis Readability/Task Analysis
Complex vocabulary, sentence structure Complex vocabulary, sentence structure
(language)
(language)
Poor design and navigationPoor design and navigation
High health literacy load High health literacy load
High numeracy demands, especially in the High numeracy demands, especially in the
presentation of lab/test results
presentation of lab/test results
Prevention and maintenance information was Prevention and maintenance information was
important to participants, but current systems
important to participants, but current systems
use a wide range of packaged patient education,
use a wide range of packaged patient education,
none ideally controlled for literacy or health
Current Stage of Study:
Current Stage of Study:
Usability Testing
Usability Testing
54, 2 hr. one on one usability sessions 54, 2 hr. one on one usability sessions
includes computer/internet training for includes computer/internet training for
all participants, regardless of prior
all participants, regardless of prior
experience
experience
Review 3 patient portals to perform tasks:Review 3 patient portals to perform tasks:
Medication managementMedication management
Lab/test resultsLab/test results
Initial Participant Demographics
Initial Participant Demographics
24 participants interviewed (N ~54) 24 participants interviewed (N ~54)
Average age = 35.9Average age = 35.9
NVS HL Test (# scoring in the category of NVS HL Test (# scoring in the category of
‘
‘adequateadequate’’ literacy) = 2/24literacy) = 2/24
Experience with computers and the Experience with computers and the
internet varied from no experience to 5+
internet varied from no experience to 5+
yrs.
Snapshot Findings still
Snapshot Findings still ““in the fieldin the field””
System System ‘‘11’’
3/243/24 located the problem listlocated the problem list
12/24 determined if medications could be refilled12/24 determined if medications could be refilled
12/24 determined if test results were normal or abnormal12/24 determined if test results were normal or abnormal
System System ‘‘22’’
8/248/24 located recommendations for cancer screening located recommendations for cancer screening
tests
tests
14/24 found information about side effects for the 14/24 found information about side effects for the
medication
medication
14/24 found past test results14/24 found past test results
System System ‘‘33’’
11/2411/24 located the problem listlocated the problem list
11/24 found lab/test results11/24 found lab/test results
Categories of Problems
Categories of Problems
User Characteristics: User Characteristics: Linguistic/readingLinguistic/reading ConfidenceConfidence NavigationNavigationActive reasoning Active reasoning -
-cognitive demands cognitive demands Patient Portal: Patient Portal: ReadabilityReadability
Strategic repetition Strategic repetition
Design Design
Problems Encountered
Problems Encountered
Mismatch between user
Mismatch between user
’
’
s linguistic
s linguistic
search strategies and portal
search strategies and portal
language.
language.
“
“
A lot of the places I clicked on was not
A lot of the places I clicked on was not
what I expected.
Portal Example
Problems Encountered
Problems Encountered
Reading complex language and abbreviations, Reading complex language and abbreviations,
e.g.,
e.g., ““pure hypercholesterolemiapure hypercholesterolemia””, , ““LDLLDL””, , ““PHRPHR””
Portal Example
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Portal Example
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Patient Portals
Patient Portals
–
–
Lab Results
Lab Results
Next Steps
Next Steps
Develop and empirically test linguistic aids and
Develop and empirically test linguistic aids and
cognitive tools to improve the usability of patient
cognitive tools to improve the usability of patient
electronic medical records for underserved
electronic medical records for underserved
populations:
populations:
Human factors engineeringHuman factors engineering
User User -- centered designcentered design
Health literacy principlesHealth literacy principles
Integrate existing consumer technology literacy into Integrate existing consumer technology literacy into
design