Involving Diverse Populations · Cynthia Baur - Centers for Disease Control and Prevention Adolph...

Involving Diverse PopulationsSteve Downs - Robert Wood Johnson FoundationFrancesca Gany - New York University Medical CenterM. Chris Gibbons - Johns Hopkins UrbanHealth InstituteCynthia Baur - Centers for DiseaseControl and PreventionAdolph Falcón - National Alliancefor Hispanic Health

Involving Diverse PopulationsFrancesca GanyNew York University Medical Center

Health IT:Promoting Accessto the I through T

The Center for Immigrant HealthNew York University School of Medicine

The Center for Immigrant HealthNYU School of Medicine

Founded in 1989Network of community members/CBOs/FBOs,providers, researchers, facilities andadministrators, program and policymakersMission: To facilitate linguistically, culturally,and epidemiologically sensitive health services

To reduce health disparitiesResearch, Education/Training , Program/Policy

PARTNERS

Health Information Barriers of Focus

Language and Literacy

Economic Access to Technology

NACHOS

Using Technology to Enable HealthInformation Exchange

RSMI

Intervention:Remote SimultaneousMedical Interpreting System(RSMI)

Trained Simultaneous Medical Interpreters

Remotely Located, Pooled Resource

Spanish, Mandarin, Cantonese, Bengla,Polish, French, Haitian Creole

How Effective is RSMI?Thanks:

UHFAltmanNew York Community TrustCommonwealth FundCalifornia Endowment

Research Questions

Does RSMI Improve Timely Diagnosis ofDepression?

Does RSMI Facilitate AppropriateFollow-up Care?

Research Questions

Does RSMI Improve Adherence to ScreeningGuidelines?

Does RSMI Improve Outcomes for ChronicDiseases?

Diabetes, Hypertension, and Hypercholesterolemia

Research QuestionsDoes RSMI lead to fewer interpretingerrors?

Is RSMI a more efficient form ofinterpreting?

Does RSMI lead to improvedunderstanding of exit instructions

Error Analysis and Efficiency Scripted Encounters:

Spanish and Chinese: TB, Menopause,Diabetes, DepressionBengali: Breast Cancer

RSMI, Proximate Consecutive, Over-the-telephone Consecutive, Ad Hoc

Patient/Doctor ActorsEncounters Audiotaped and Transcribed

Error Analysis ToolWord-by-word, and by concept

Linguistic errors: meaningful and non-meaningful

Medical errors: no, mild, moderate, high, andlife-threatening significance

HPI, meds/allergies, family history, diagnosis,plan, psychosocial, F/U, patient education

Error Analysis PanelLinguist and 3 physicians, at least 2bilingual

Scored separately, then discusseddifferences until consensus

Error Analysis

Error rate per utterance

Medically significant/Category

Time

Control for training

Spanish Error AnalysisRSMI versus non-RSMI

RSMI 30% as likely to result in potential medical error

**p<0.05

Spanish Error Analysis: Odds Ratioof a moderately significant to life-threatening errorTrained Proximate

ConsecutiveTrained RemoteConsecutiveAd Hoc(18 yrsexperience)Trained RemoteSimultaneous

6.3***

7.54***

1.71

1.00

***p<0.001

Error Analysis Efficiency Results

RSMI4762.00

Proximal Ad-Hoc41095.00

ProximalConsecutive

41174.75

Distal Consecutive41420.75

MethodNMean

Mean time (in seconds) for each group

Spanish Efficiency

RSMI is 30% faster than the nextfastest mode(ad hoc)

RSMI two times faster than over-the-phone consecutive

Spanish encounters more accurateand efficient with RSMI

Bengali Error Analysis Standardized Training

Standardized Practice

One Script Across All Modes

Training: Error ExamplesDr: The results were positive which means that you carrythe gene that puts you at risk for developing breastcancerInt: The results were correct

Dr: One important thing that you have going for you is thefact that the cancer has probably been caught earlyInt: One important thing is the fact that the cancer isworking quickly in your body

Dr: The doxy could hurt your heartInt: The doxy can give you pain

Training Matters27% of errors made by untrainedinterpreters were of moderate orgreater clinical significance vs. 8.5% oferrors made by trained interpreters

Vocabulary precision rate .69 fortrained vs. 0.34 for the untrained

Study DesignRandomized Control for Discordant(Spanish-English, Mandarin-English, Cantonese-English)

RSMI

Usual and Customary

Language Concordant Encounters: English-English,Spanish-Spanish, Chinese-Chinese

Immigrants at Risk: Language andInfluenza Vaccination

462 patients were enrolled in the study between November2003 and July 2004102 were at the highest risk of complications from influenza(chronic medical condition, age, or pregnancy) Only 10 patients in this group were referred for vaccination

9 received vaccination54 patients aged 50 to 64 years without underlying medicalconditions composed a second group who were eligible

4 in this group were referred for and received flu vaccination

None of the Cantonese or Mandarin-speakingpatients in either group received vaccination.

CLEANRSMI associated with a higher referralrate for screening colonoscopy (OR of1.7) compared with U&CPhysicians in “language concordant”encounters had lower rates of referralsfor screening colonoscopy thanlanguage discordant

Instructions GivenAudiotape analyses of 214 ER Spanish languageencounters Spanish language concordant, RSMI, U&CTrained RSMI

mean # instructions per encounter: 14.29,std dv 6.9equal to Spanish language concordant

(14.33, std dev 6.33)Usual and customary interpreting

significantly fewer instructions: mean # 11.9, std dev6.17

Patient Satisfaction/UnderstandingPerception

ER and Clinic Combined

First Visits

Language Concordant(E-E,Sp-Sp, M-M,Ca-Ca), RSMI, Usual and Customary

Understanding MD Understands Pt Underst Explan Pt Under Instructions

9%8%3%15%9%4%10%2%2%NW

59%54%33%50%52%33%55%49%33%W

32%38%63%34%39%59%35%49%69%VW

UCRSMI

LCUCRSMI

LCUCRSMI

LC

SatisfactionHow would you ratethe MD overall?

LC RSMI UCEx 63% 56% 49%Gd 32% 40% 44%Fa 4% 4% 4%

How satisfied withcare overall?

LC RSMI UCVery 57% 57% 47%Swht 38% 40% 48%SwtDis 4% 3% 5%

How well did the method protectyour privacy?

RSMI U&C

Very Well 49% 40%Well 44% 49%Not Well 7% 10%Poor 0% 1%

No DifferenceHow well did the interpreter understandyou?Did the interpreter listencarefully(yes/no)?Did the interpreter treat you withrespect?(trend)How well did the interpreterinterpret?(trend)

Virtual Community for Immigrantswith Cancer

Project Overview

Online support group (OSG) to provideinformational,emotional, andsocial network support to immigrants with cancer

Service + Research

Funded by Langeloth Foundation

ParticipantsSpanish-speaking immigrantsNewly diagnosed with breast cancer48 participants in OSG, 24 in control groupNo computer/Internet experience necessary

Training on computers and Internet, if necessaryProvision of computers and Internet access, ifnecessary

VCIC Online Support Groups8 participants in each groupSeries of 30 weekly online chat sessionsLed by trained facilitatorsPeriodic informational online sessions

Recruitment of ParticipantsKey community stakeholders, includingvolunteer survivors, have aided tremendously

80% of potential participants approachedenrolled

Reasons for declining have includednot having a stable place to livenot having a telephone at home for internetaccessfamily issues, such as family member death/illness

Who is Chatting?Mean age is 46.8 years (range 22-84 years)Hail from several Latin American countries Top two countries: Dominican Republic(25.5%) Colombia (18.2%)Mean number of years in the U.S. is 16.7(range 0.25-43) years40.7% have not completed high school32.7% employed outside their homes11.3% do not have health insurance

Chat-Sessions ThemesChat-sessions themes have been varied,including:

FaithFamily, including lack of family in the U.S.Financial/insurance issuesHealth InformationBreast reconstructionPain

Dropping Out of VCICDropout rate to date has been 13%Reasons have included

participant’s deatheviction from apartmentdisconnection of telephonetoo tired to participatework schedule changesreturn to home country

ResearchFeasibility, Acceptance, and Effectiveness

What percentage of immigrants with cancercan be recruited and retained for onlinesupport groups?

How effective are online support groups inenabling emotional well-being for immigrantswith cancer?

Feedback from Participants

“…El hecho de no vernos las caras, el que nohaya contacto físico, facilita el que podamostener mas libertad para expresarnos yaconsejarnos. Esto también nos ‘permiteabrirnos mas emocionalmente alcomunicarnos. Yo me atrevería a decir que elsimple hecho de usar la computadora nosprovee o nos ayuda a sentirnos masimportantes, con un tipo de valor y poderdistinto. Definitivamente puedo decir sinlugar a dudas que el haber aceptadointegrarme a participar en el programa deCAVIC ha sido una de las mejores cosas queme han podido pasar en estos últimostiempos…”

“… The fact that we can’t see each other’s faces, thatthere is not physical contact, allows us to have morefreedom to express ourselves and give each other advice.This also permits us to open ourselves up emotionallywhen we are communicating. I would venture to saythat the simple act of using the computer provides uswith and helps us to acquire a new and different type ofsecurity, with a distinct type of bravery and power.Definitely, I can say, without a doubt, that having chosento integrate myself or participate in CAVIC has been oneof the best things that has happened to me in the pastfew years.”

“Bueno, yo les doy la gracias al programaCAVIC. Pues me relaje bastante, pude en ellimpiar mi cuerpo y mi mente de tantosconfusión y gracias a Lauren pude cambiar demedico... Pues ellos se dedicaron aayudarnos a todas nosotras a sacarnos una odos horas de esa rutina que una como madreexperimenta aunque fuera una vez a lasemana, me sentí y muy agradecida contodos los ayudos tanto del programa CAVICcomo de todos los compañeros que conocí yespero que seguir siendo mis amigas porsiempre.”

“Well, I give my thanks to the VCIC program. I was able to relax a lot, I could clear out my body and mind of so much confusion, and thanks to Lauren, I could change my doctor. They dedicated themselves to all of us, to take us away one or two hours a week, from this routine that one experiences as a mother. Although it was only once a week, I felt so grateful for all of the help, from both the program as well as all of my companeras that I met, and I hope will continue to be my friends forever.”

“Mi comentario se basa en lo agradecida ysatisfecha quede con las personas que de unamanera o otra me han ayudado con suapoyo, charla, compresión y pacienciadurante este estudio de CAVIC. Fueron demucho valor los comentarios y lasexperiencias que compartimos unas conotras. Los mas Hermosa de todo es haber lasconocido a todas aunque fuera por elinternet. Mil gracias por la compu y que Diosbendiga a todo el que aporto su granito dearena. Les quiero mucho. “

“My comments address how grateful and satisfied Iam with the people, who in some way or another,have helped me with their support, words,understanding and patience during this VCIC study.Their commentary was very valuable, as were theexperiences that we shared with one another. Themost beautiful of all is having met each one of you all,although it was through the Internet. Thanks a millionfor the computer and may God bless each person whogave of themselves to this. I love you all very much.”

Involving Diverse PopulationsM. Chris GibbonsJohns Hopkins Urban Health Institute

Improving Disparities with eHealth Opportunities & Observations

M Chris Gibbons, MD, MPHAssociate Director, Johns Hopkins Urban Health Institute

Director, Center for Community HEALTHAssistant Professor, Johns Hopkins Medical Institutions

2013 E. Monument St.Baltimore, MD 21205

410-502-3845 – v410-955-2303 - f

The potential of eHealth Solutions

Far beyond EMR, EPR and CPOE

On the brink of a transition from a serviceand technology to an information society


The advent of ubiquitous computing,pervasive computing, RFID, Mesh networksand WiMax and nanotechnology will usherin an era of unprecedented connectivity andcommunication between humans (H2H) andthings (H2T) and between things (T2T)


Human to Human (H2H) connectivity willenable providers and healthcare systems tostay in audio and visual contact as needed,whoever you are, where ever you live.


Human to Thing (H2T) connectivity willenable both providers and patients to knowabout the health status of individuals andpopulations at any time, in real time


Thing to Thing (T2T) connectivity in theabsence of human involvement will mean thedevelopment of “intelligent devices” that canmake decisions and do things independent ofthe “human element”» Smart Jackets» Insulin phones


• In this world» Clinicians know and understand how all

social, environmental and biological factorscollectively contribute to ill health

» Health risks are managed before they becomediseases and before patients ever need to go tothe hospital


• In this world» healthcare is proactive not reactive» Patients don’t delay seeking care» Medical errors rarely made


Over time, there exists real potential to makesignificant impact towards the goal ofreducing and eliminating disparities inhealth care access, utilization and outcomes.

Realizing the Potential

Who’s online?

How are they getting online?

What are they doing online?

What difference does it make to health?

Who’s online?

Computer ownership and internet use isstrongly influenced by household income.

African Americans are less likely thanWhites to own a computer or be online at allincome and educational levels

How are they getting online?• Home broadband use has rapidly increased

among Whites and African Americans since2002

The gap in utilization has increased from 4% to19%

Differences persist at all income and educationallevels

What are they doing online?• African-Americans less likely the Whites to

• use email• Take online courses• News/sports/weather• Purchase clothes, books or PC.s• Obtain information on products• Use the internet every day• Use it to stay connected with family


• African-Americans more likely the Whites to• Seek religious information• Seek health information• Major life issues (place to live)• Download music• Respond to online advertising• Make certain online purchases (music, video)


• African-Americans equally likely as Whites to• Seek a job• Watch TV, movies• Listen to the radio

What difference does it make?

• Despite improvements, disparities exist in• Extent of use• Knowledge about computer/internet use• Quality of technical connections• Quality of social support


• Differences in information services vs.information goods

• Differences in utilization must be viewed withina cultural context


• Ability of AA to benefit may lag behind that ofwhites if the broadband gap is not reversed

• Should not expect a priori equivalence inoutcomes by race or maximal efficacy acrossraces


• Without dedicated investments in understandingthe perspectives of minorities towards HealthInformation Technologies we risk buildingsystems that remain largely ineffective forsignificant and growing proportions of oursociety. This will limit the value of ourinvestments and risk increasing rather thandecreasing the health gap.

A final word

The challenges may seem insurmountable,but the pay off is priceless!

Involving Diverse PopulationsCynthia BaurCenters for Disease Control and Prevention

Personal Health Records, HealthLiteracy and Diverse Populations

Cynthia Baur, Ph.D.Centers for Disease Controland PreventionU.S. Department of Health andHuman ServicesDecember 7, 2006

What is Health Literacy?

Health literacy is the degree to whichindividuals have the capacity to obtain,process, and understand basic healthinformation and services needed to makeappropriate health decisions.

Key concepts:– Obtain -- Understand

– Process -- Decide

Why is Health Literacy Important?

Health literacy is important because it affects people’s ability to: Navigate the healthcare system, including locating providers and

services and filling out forms Share personal and health information with providers Engage in self-care and chronic disease management Adopt health-promoting behaviors, such as exercising and eating a

healthy diet Act on health-related news and announcements

These intermediate outcomes impact: Health outcomes Healthcare costs Quality of care

Health Literacy in the AdultPopulation

Measured by the 2003 National Assessmentof Adult Literacy (NAAL)

Nationally representative sample of morethan 19,000 adults

Health literacy component within the generalliteracy study

Assessed English-speaking adults’ ability touse and understand print health information

Percentage of Adults in EachLiteracy Level: 2003

Who is Most Likely to Have theLowest Health Literacy Skills?

Racial and ethnic minorities, exceptAsian/Pacific Islanders

Persons who spoke languages other thanEnglish before starting school

Persons 65 and older Persons who did not complete high school Persons living below the poverty level Persons who do not use the Internet for

health information

Below Basic Health Literacy andHealth Information Choices

30 million adults in below basic healthliteracy category– 37% or 11 million no information from

newspapers– 41% or 12 million no information from magazines– 41% or 12 million no information from books or

brochures– 80% or 24 million no information from the Internet

What is the Relevance of these Datafor PHRs?

Adults with limited health literacy skills– are not accustomed to using the Internet as a

health resource– prefer mass media or interpersonal sources of

health information– will be unable to handle many of the multiple and

complex tasks in PHRs

Examples of PHR Tasks

Navigating Web sites and other applications Seeking out information Entering data Comparing two or more pieces of information Reading charts and graphs Writing messages Analyzing reports Reading textual information

Vision of PHRs for All

All types of consumers are included in thedesign of and have meaningful access toevidence-based PHRs with strong privacyand security protections– Extensive consumer research is essential

Diverse consumers have the skills andsupport to evaluate, choose and use PHRs– Improved health literacy is essential

Vision (cont.)

Healthcare systems use the full range of e-health tools to engage and supportconsumers– Segmentation of PHR markets is essential

Public policies and programs supportsustainable development and disseminationof appropriate e-health tools, includingcommunities served by safety net providers– Supporting safety net providers is essential

Vision (cont.)

Alliances and partnerships facilitate accessto and use of PHRs, consistent with theperspectives of each consumer group– Easy access through trusted sources is essential

Appropriate funding and incentives exist inpublic policy and the market to enablesustainable business models for PHRs withdemonstrated effectiveness– Sustainability of products is essential

Report on Diversity and e-health

Expanding the Reach and Impact ofConsumer e-health Tools

U.S. Department of Health and HumanServices

Available online atwww.health.gov/communication

Contact Information

National Center for Health Marketing Division, Health Communication and

Marketing 404-498-6411 [email protected]

Involving Diverse PopulationsAdolph FalcónNational Alliance for Hispanic Health

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