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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

(2)

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

(3)

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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

(4)
(5)

5

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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

(6)

What is health literacy?

What is health literacy?

The

The 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)

(7)

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(8)
(9)

9

9

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

(10)

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)

(11)

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

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(13)

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

(14)

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.”

(15)

15

15

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)

(16)

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.”

(17)

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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.”

(18)
(19)

Task Analysis, Readability,

Task Analysis, Readability,

Health Literacy Load Analysis

(20)

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

(21)

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Health Literacy Load Analysis

(22)

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

(23)

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

(24)

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.

(25)

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

(26)

Categories of Problems

Categories of Problems

User Characteristics: User Characteristics: Linguistic/readingLinguistic/reading ConfidenceConfidence NavigationNavigation

Active reasoning Active reasoning -

-cognitive demands cognitive demands Patient Portal: Patient Portal: ReadabilityReadability

Strategic repetition Strategic repetition

Design Design

(27)

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.

(28)

Portal Example

(29)

Problems Encountered

Problems Encountered

Reading complex language and abbreviations, Reading complex language and abbreviations,

e.g.,

e.g., ““pure hypercholesterolemiapure hypercholesterolemia””, , ““LDLLDL””, , ““PHRPHR””

(30)

Portal Example

(31)

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31

Portal Example

(32)
(33)

33 33

Patient Portals

Patient Portals

Lab Results

Lab Results

(34)

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

References

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