Beyond the SEA - National Tele-discussion Erin M. Dunbar, MD [email protected];...

Beyond the SEA - National Tele-discussionBeyond the SEA - National Tele-discussion

Erin M. Dunbar, MDErin M. Dunbar, MD

[email protected]; [email protected]; 352-273-9000

Beyond the SEA - National Tele-discussionBeyond the SEA - National Tele-discussion


[email protected]; [email protected]; 352-273-9000

THE ESSENTIAL ROLE OFTHE ESSENTIAL ROLE OF

HEALTH CARE LITERACYHEALTH CARE LITERACY

IN THE MEDICAL TEAMIN THE MEDICAL TEAM

A SpecialA SpecialA SpecialA Special

To:To:

Teleconference hosts and participantsTeleconference hosts and participants

Colleagues and co-investigatorsColleagues and co-investigators

Patients, caregivers, and care teamsPatients, caregivers, and care teams

Disclosures:Disclosures:Disclosures:Disclosures:

Scientific Advisor: GenentechScientific Advisor: Genentech

Journal Editorials, Reviews & Book ChaptersJournal Editorials, Reviews & Book Chapters

ObjectivesObjectivesObjectivesObjectives

Interdisciplinary Health Care TeamsInterdisciplinary Health Care TeamsExample at UFExample at UF

Increasing Tasks ~ Decreasing Time & ToolsIncreasing Tasks ~ Decreasing Time & ToolsHuge Unmet NeedHuge Unmet Need

Health Care Literacy From All & For AllHealth Care Literacy From All & For AllHealth Care Literacy Around the WorldHealth Care Literacy Around the WorldHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UF

Forward TogetherForward Together

Interdisciplinary Health Care TeamsInterdisciplinary Health Care TeamsExample at UFExample at UF

Increasing Tasks ~ Decreasing Time & ToolsIncreasing Tasks ~ Decreasing Time & ToolsHuge Unmet NeedHuge Unmet Need

Health Care Literacy From All & For AllHealth Care Literacy From All & For AllHealth Care Literacy Around the WorldHealth Care Literacy Around the WorldHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UF

Forward TogetherForward Together

Definition of Health Care LiteracyDefinition of Health Care LiteracyDefinition of Health Care LiteracyDefinition of Health Care Literacy

Health Care Literacy (HCL) or Health Literacy Health Care Literacy (HCL) or Health Literacy (HL) is defined(HL) is defined by the WHO as 'the cognitive and by the WHO as 'the cognitive and social skills which determine the motivation and social skills which determine the motivation and ability of individuals to gain access to, understand, ability of individuals to gain access to, understand, and use information in ways which promote and and use information in ways which promote and maintain good health.’maintain good health.’

Gap between the definition & its applicationGap between the definition & its applicationThree levels: functional, communicative, critical Three levels: functional, communicative, critical

Research is needed to Research is needed to develop measuresdevelop measures of HL and of HL and measure the interactionmeasure the interaction of the patient HL within of the patient HL within health and social contexts (Instit of Medicine, ‘03)health and social contexts (Instit of Medicine, ‘03)

Health Care Literacy (HCL) or Health Literacy Health Care Literacy (HCL) or Health Literacy (HL) is defined(HL) is defined by the WHO as 'the cognitive and by the WHO as 'the cognitive and social skills which determine the motivation and social skills which determine the motivation and ability of individuals to gain access to, understand, ability of individuals to gain access to, understand, and use information in ways which promote and and use information in ways which promote and maintain good health.’maintain good health.’

Gap between the definition & its applicationGap between the definition & its applicationThree levels: functional, communicative, critical Three levels: functional, communicative, critical

Research is needed to Research is needed to develop measuresdevelop measures of HL and of HL and measure the interactionmeasure the interaction of the patient HL within of the patient HL within health and social contexts (Instit of Medicine, ‘03)health and social contexts (Instit of Medicine, ‘03)

Patient health literacy and participation in the health-care process. Ishikawa H, Yano E; Health Expect. 6/2008; Health literacy revisited: what do we mean and why does it matter? Peerson A, Saunders M,

Health Promot Int. 4/09

Interdisciplinary Interdisciplinary Health CareHealth Care

Multiple ModalitiesMultiple Modalities

Multiple LocationsMultiple LocationsMultiple LocationsMultiple Locations

Multiple ToolsMultiple ToolsMultiple ToolsMultiple Tools

Increasing Tasks ~ Decreasing ToolsIncreasing Tasks ~ Decreasing ToolsIncreasing Tasks ~ Decreasing ToolsIncreasing Tasks ~ Decreasing Tools

DiagnosisDiagnosis Anatomy & FunctionAnatomy & Function Disease CourseDisease Course Treatments (2Treatments (2ndnd opinions, multi- opinions, multi-

modality, “trials” vs. “routine”)modality, “trials” vs. “routine”) Medical TerminologyMedical Terminology Symptom ManagementSymptom Management PrognosisPrognosis Financial AssistanceFinancial Assistance Coping & EmotionalCoping & Emotional Work-related IssuesWork-related Issues Caregiver & ChildrenCaregiver & Children Family DynamicsFamily Dynamics

DiagnosisDiagnosis Anatomy & FunctionAnatomy & Function Disease CourseDisease Course Treatments (2Treatments (2ndnd opinions, multi- opinions, multi-

modality, “trials” vs. “routine”)modality, “trials” vs. “routine”) Medical TerminologyMedical Terminology Symptom ManagementSymptom Management PrognosisPrognosis Financial AssistanceFinancial Assistance Coping & EmotionalCoping & Emotional Work-related IssuesWork-related Issues Caregiver & ChildrenCaregiver & Children Family DynamicsFamily Dynamics

Increasing Complexity of Increasing Complexity of CareCare

Decreasing Continuity of Decreasing Continuity of CareCare

Travel difficultiesTravel difficultiesMoneyMoney ImmobilityImmobilityWorking caregiverWorking caregiver

Declining ReimbursementDeclining Reimbursement Vanishing Time AllowanceVanishing Time Allowance

15 minute office visit!15 minute office visit! Long distances between Long distances between

Loves onesLoves ones Unregulated & Enormous Unregulated & Enormous

“Resources”“Resources” InternetInternetBlogsBlogs

Increasing Complexity of Increasing Complexity of CareCare

Decreasing Continuity of Decreasing Continuity of CareCare

Travel difficultiesTravel difficultiesMoneyMoney ImmobilityImmobilityWorking caregiverWorking caregiver

Declining ReimbursementDeclining Reimbursement Vanishing Time AllowanceVanishing Time Allowance

15 minute office visit!15 minute office visit! Long distances between Long distances between

Loves onesLoves ones Unregulated & Enormous Unregulated & Enormous

“Resources”“Resources” InternetInternetBlogsBlogs

Huge Unmet Need!Huge Unmet Need!Huge Unmet Need!Huge Unmet Need!

Huge Unmet NeedHuge Unmet NeedHuge Unmet NeedHuge Unmet NeedDramatic medical & financial implications:Dramatic medical & financial implications:Medicare claims from 2003–2004 (11 million)Medicare claims from 2003–2004 (11 million)19.6% were re-hospitalized within 30 days.19.6% were re-hospitalized within 30 days.

50%: no MD visit from discharge to re-50%: no MD visit from discharge to re-admit.admit.

34.% were re-admitted within 90 days.34.% were re-admitted within 90 days.Unplanned re-admits = $17.4 billion in 2004.Unplanned re-admits = $17.4 billion in 2004.Lack of educationLack of education during during dischargedischarge planning planning

and and subsequent physician officesubsequent physician office visits were visits were implicated as implicated as causativecausative..

Dramatic medical & financial implications:Dramatic medical & financial implications:Medicare claims from 2003–2004 (11 million)Medicare claims from 2003–2004 (11 million)19.6% were re-hospitalized within 30 days.19.6% were re-hospitalized within 30 days.

50%: no MD visit from discharge to re-50%: no MD visit from discharge to re-admit.admit.

34.% were re-admitted within 90 days.34.% were re-admitted within 90 days.Unplanned re-admits = $17.4 billion in 2004.Unplanned re-admits = $17.4 billion in 2004.Lack of educationLack of education during during dischargedischarge planning planning

and and subsequent physician officesubsequent physician office visits were visits were implicated as implicated as causativecausative..

Re-hospitalizations among Patients in the Medicare Fee-for-Service Re-hospitalizations among Patients in the Medicare Fee-for-Service Program, NEJM, 1/09, Stephen F. Jencks, M.D., M.P.H., Mark V. Williams, Program, NEJM, 1/09, Stephen F. Jencks, M.D., M.P.H., Mark V. Williams,

M.D.,and Eric A. Coleman, M.D., M.P.H.M.D.,and Eric A. Coleman, M.D., M.P.H.

Huge Unmet NeedsHuge Unmet NeedsHuge Unmet NeedsHuge Unmet Needs

Identification of educational needsIdentification of educational needs is important, is important, but the “how to” is inadequatebut the “how to” is inadequate

A new diagnosis has deep & lasting effectsA new diagnosis has deep & lasting effectsEmotional, social, physical limitationsEmotional, social, physical limitations

Formal information & support services are Formal information & support services are needed for copingneeded for coping

Little is known about how “routine practices” Little is known about how “routine practices” influence patients' experienceinfluence patients' experience

Identification of educational needsIdentification of educational needs is important, is important, but the “how to” is inadequatebut the “how to” is inadequate

A new diagnosis has deep & lasting effectsA new diagnosis has deep & lasting effectsEmotional, social, physical limitationsEmotional, social, physical limitations

Formal information & support services are Formal information & support services are needed for copingneeded for coping

Little is known about how “routine practices” Little is known about how “routine practices” influence patients' experienceinfluence patients' experience

1. Patient care at diagnosis: a planned education approach. Vile C, Nurs Stand. 3/04; 2. How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Hugel H, et al, Amyotroph Lateral Scler. 9/06; 3. Identifying the educational needs and concerns of newly diagnosed patients with breast cancer after surgery. Stephens PA, et al Clin J Oncol Nurs. 4/08

Huge Unmet NeedHuge Unmet NeedHuge Unmet NeedHuge Unmet Need

Cont’dCont’dMajor themes:Major themes:

Communication of the diagnosisCommunication of the diagnosisFormal supportFormal supportInformation specific needsInformation specific needsCoordinated servicesCoordinated services

Healthcare system is inadequateHealthcare system is inadequateImportance of a interdisciplinary, coordinated Importance of a interdisciplinary, coordinated

approachapproach

Cont’dCont’dMajor themes:Major themes:

Communication of the diagnosisCommunication of the diagnosisFormal supportFormal supportInformation specific needsInformation specific needsCoordinated servicesCoordinated services

Healthcare system is inadequateHealthcare system is inadequateImportance of a interdisciplinary, coordinated Importance of a interdisciplinary, coordinated

approachapproach

1. Patient care at diagnosis: a planned education approach. Vile C, Nurs Stand. 3/04; 2. How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Hugel H, et al, Amyotroph Lateral Scler. 9/06; 3. Identifying the educational needs and concerns of newly diagnosed patients with breast cancer after surgery. Stephens PA, et al Clin J Oncol Nurs. 4/08

Unmet NeedsUnmet NeedsUnmet NeedsUnmet NeedsPatient/caregiver self-seeking information is inadequatePatient/caregiver self-seeking information is inadequate Internet information seeking behaviors of Internet information seeking behaviors of

parents whose children have life-threatening parents whose children have life-threatening illnessesillnesses N=129, N=129, phone survey, pediatric palliative carephone survey, pediatric palliative care

75% parents used internet, 64% used daily75% parents used internet, 64% used dailyNever used: Hispanic (50%), less than high school Never used: Hispanic (50%), less than high school

educ. (64%) (P ≤ 0.02)educ. (64%) (P ≤ 0.02) Despite high levels of e-health literacy; they are Despite high levels of e-health literacy; they are not not

confident or are unsure about the qualityconfident or are unsure about the quality of information of information on the Interneton the Internet

Patient/caregiver self-seeking information is inadequatePatient/caregiver self-seeking information is inadequate Internet information seeking behaviors of Internet information seeking behaviors of

parents whose children have life-threatening parents whose children have life-threatening illnessesillnesses N=129, N=129, phone survey, pediatric palliative carephone survey, pediatric palliative care

75% parents used internet, 64% used daily75% parents used internet, 64% used dailyNever used: Hispanic (50%), less than high school Never used: Hispanic (50%), less than high school

educ. (64%) (P ≤ 0.02)educ. (64%) (P ≤ 0.02) Despite high levels of e-health literacy; they are Despite high levels of e-health literacy; they are not not

confident or are unsure about the qualityconfident or are unsure about the quality of information of information on the Interneton the Internet

Knapp, C…Shenkman, E, Pediatr Blood Cancer. 2011 May;56(5):805-11. Knapp, C…Shenkman, E, Pediatr Blood Cancer. 2011 May;56(5):805-11. doi: 10.1002/pbc.22674. Epub 2010 Dec 7. doi: 10.1002/pbc.22674. Epub 2010 Dec 7.

Unmet NeedUnmet NeedUnmet NeedUnmet NeedPatient’s ability to use information is inadequatePatient’s ability to use information is inadequate Health literacy & the provision of information to women with Health literacy & the provision of information to women with

breast cancerbreast cancer Key information on treatment complications and clinical trials is often Key information on treatment complications and clinical trials is often

imparted using written educational material imparted using written educational material Study of “functional” HL vs. the level of written information provided, Study of “functional” HL vs. the level of written information provided,

cross-sectional surveycross-sectional survey HL levels & reading level of written patient information were high, yet HL levels & reading level of written patient information were high, yet

9% of patients would be unable to “read” the information provided9% of patients would be unable to “read” the information provided ““Functional” HL levels were lower, with 19% “inadequate”Functional” HL levels were lower, with 19% “inadequate” Patient educ. materials must be written at an appropriate level and Patient educ. materials must be written at an appropriate level and

different modalities of communication should be used to ensure different modalities of communication should be used to ensure adequate comprehensionadequate comprehension

Patient’s ability to use information is inadequatePatient’s ability to use information is inadequate Health literacy & the provision of information to women with Health literacy & the provision of information to women with

breast cancerbreast cancer Key information on treatment complications and clinical trials is often Key information on treatment complications and clinical trials is often

imparted using written educational material imparted using written educational material Study of “functional” HL vs. the level of written information provided, Study of “functional” HL vs. the level of written information provided,

cross-sectional surveycross-sectional survey HL levels & reading level of written patient information were high, yet HL levels & reading level of written patient information were high, yet

9% of patients would be unable to “read” the information provided9% of patients would be unable to “read” the information provided ““Functional” HL levels were lower, with 19% “inadequate”Functional” HL levels were lower, with 19% “inadequate” Patient educ. materials must be written at an appropriate level and Patient educ. materials must be written at an appropriate level and

different modalities of communication should be used to ensure different modalities of communication should be used to ensure adequate comprehensionadequate comprehension

Reference:Reference:

Unmet NeedsUnmet NeedsUnmet NeedsUnmet NeedsProvider & public-derived information is inadequateProvider & public-derived information is inadequate Attitudes to Colorectal Cancer Screening After Reading Attitudes to Colorectal Cancer Screening After Reading

the Prevention Information, the Prevention Information, N=42, >50yo, questionnaireN=42, >50yo, questionnaire Barriers to increase colorectal cancer screening are negative Barriers to increase colorectal cancer screening are negative

attitudes to screening testsattitudes to screening tests Negative attitudes were evoked through reading cancer Negative attitudes were evoked through reading cancer

prevention information prevention information and impede the decision to get screenedand impede the decision to get screened Additional Additional education about self-relevance education about self-relevance of cancer risk is of cancer risk is

necessarynecessary Further research in individuals with limited HL is recommendedFurther research in individuals with limited HL is recommended

Provider & public-derived information is inadequateProvider & public-derived information is inadequate Attitudes to Colorectal Cancer Screening After Reading Attitudes to Colorectal Cancer Screening After Reading

the Prevention Information, the Prevention Information, N=42, >50yo, questionnaireN=42, >50yo, questionnaire Barriers to increase colorectal cancer screening are negative Barriers to increase colorectal cancer screening are negative

attitudes to screening testsattitudes to screening tests Negative attitudes were evoked through reading cancer Negative attitudes were evoked through reading cancer

prevention information prevention information and impede the decision to get screenedand impede the decision to get screened Additional Additional education about self-relevance education about self-relevance of cancer risk is of cancer risk is

necessarynecessary Further research in individuals with limited HL is recommendedFurther research in individuals with limited HL is recommended

Liu, CJ et al, J Cancer Educ. 2011 Mar 1

Unmet NeedUnmet NeedUnmet NeedUnmet NeedCurrent Health Care, Government & Industry provided Current Health Care, Government & Industry provided

information inadequate & possibly harmfulinformation inadequate & possibly harmful Cancer-related direct-to-consumer advertising: a reviewCancer-related direct-to-consumer advertising: a review The direct-to-consumer advertising (DTCA) reaches out to The direct-to-consumer advertising (DTCA) reaches out to

consumers by bypassing important gatekeepers, e.g., physicians. consumers by bypassing important gatekeepers, e.g., physicians. The emergence of new information platforms and the introduction The emergence of new information platforms and the introduction

of genetic tests directly to the consumer have heightened the of genetic tests directly to the consumer have heightened the concern with DTCA and its potential consequences. concern with DTCA and its potential consequences.

These effects of DTCA are particularly important given the These effects of DTCA are particularly important given the communication inequalities among social groups, with class, race communication inequalities among social groups, with class, race and ethnicity influencing how people access, seek, process and and ethnicity influencing how people access, seek, process and act on information. act on information.

Current Health Care, Government & Industry provided Current Health Care, Government & Industry provided information inadequate & possibly harmfulinformation inadequate & possibly harmful

Cancer-related direct-to-consumer advertising: a reviewCancer-related direct-to-consumer advertising: a review The direct-to-consumer advertising (DTCA) reaches out to The direct-to-consumer advertising (DTCA) reaches out to

consumers by bypassing important gatekeepers, e.g., physicians. consumers by bypassing important gatekeepers, e.g., physicians. The emergence of new information platforms and the introduction The emergence of new information platforms and the introduction

of genetic tests directly to the consumer have heightened the of genetic tests directly to the consumer have heightened the concern with DTCA and its potential consequences. concern with DTCA and its potential consequences.

These effects of DTCA are particularly important given the These effects of DTCA are particularly important given the communication inequalities among social groups, with class, race communication inequalities among social groups, with class, race and ethnicity influencing how people access, seek, process and and ethnicity influencing how people access, seek, process and act on information. act on information.

Kontos, EZ, Nat Rev Cancer. 2011 Feb;11(2):142-50Kontos, EZ, Nat Rev Cancer. 2011 Feb;11(2):142-50

HEALTH CARE LITERACY IS HEALTH CARE LITERACY IS ESSENTIAL TO THE MEDICAL ESSENTIAL TO THE MEDICAL

TEAMTEAM

HEALTH CARE LITERACY IS HEALTH CARE LITERACY IS ESSENTIAL TO THE MEDICAL ESSENTIAL TO THE MEDICAL

TEAMTEAM

KNOWLEDGE IS ESSENTIAL TO KNOWLEDGE IS ESSENTIAL TO HEALINGHEALING

KNOWLEDGE IS ESSENTIAL TO KNOWLEDGE IS ESSENTIAL TO HEALINGHEALING

Health Care Literacy From & For AllHealth Care Literacy From & For AllHealth Care Literacy From & For AllHealth Care Literacy From & For All

Information Technology (IT)Information Technology (IT)Studies: only basic computer skills neededStudies: only basic computer skills neededAttitudes of health professional to theAttitudes of health professional to the

development of IT in practice matters!development of IT in practice matters!Need for flexibility, appropriate education & Need for flexibility, appropriate education &

trainingtrainingNeed for the software to be 'fit for purpose‘Need for the software to be 'fit for purpose‘

Need to carefully plan the introduction of IT-based Need to carefully plan the introduction of IT-based systems into work practicessystems into work practices

Information Technology (IT)Information Technology (IT)Studies: only basic computer skills neededStudies: only basic computer skills neededAttitudes of health professional to theAttitudes of health professional to the

development of IT in practice matters!development of IT in practice matters!Need for flexibility, appropriate education & Need for flexibility, appropriate education &

trainingtrainingNeed for the software to be 'fit for purpose‘Need for the software to be 'fit for purpose‘

Need to carefully plan the introduction of IT-based Need to carefully plan the introduction of IT-based systems into work practicessystems into work practices

1. Information literacy-what it is about? Literature review of the concept and the context. Saranto K,et al. Int J Med Inform. 6/04. 2. The attitudes of health care staff to information technology: a comprehensive review of the research literature. Ward R, et al. Health Info Libr J. 6/08


Internet & other virtual mediaInternet & other virtual media Critical factors in optimizing cancer communication for Critical factors in optimizing cancer communication for

diverse audiencesdiverse audiencesliteracy, cultural, and linguistic issuesliteracy, cultural, and linguistic issues

Significant unmet needsSignificant unmet needslow-literate, multicultural, non-English-speaking low-literate, multicultural, non-English-speaking

Emphasizes the importance of understanding the Emphasizes the importance of understanding the strengths and weaknesses of online cancer strengths and weaknesses of online cancer communication for vulnerable groupscommunication for vulnerable groupsguide patients to better Websitesguide patients to better Websitessupplement that information with oral and tailored supplement that information with oral and tailored

communication.communication.

Internet & other virtual mediaInternet & other virtual media Critical factors in optimizing cancer communication for Critical factors in optimizing cancer communication for

diverse audiencesdiverse audiencesliteracy, cultural, and linguistic issuesliteracy, cultural, and linguistic issues

Significant unmet needsSignificant unmet needslow-literate, multicultural, non-English-speaking low-literate, multicultural, non-English-speaking

Emphasizes the importance of understanding the Emphasizes the importance of understanding the strengths and weaknesses of online cancer strengths and weaknesses of online cancer communication for vulnerable groupscommunication for vulnerable groupsguide patients to better Websitesguide patients to better Websitessupplement that information with oral and tailored supplement that information with oral and tailored

communication.communication.

1. Online cancer communication: meeting the literacy, cultural and linguistic needs of diverse audiences. Neuhauser L, Patient Educ Couns. 6/08; 2. Evidence-based

resources and the role of librarians in developing evidence-based practice curricula. Klem ML. J Prof Nurs. 12/05


Internet & other virtual media, cont’dInternet & other virtual media, cont’d Development & Introduction of TechnologiesDevelopment & Introduction of Technologies

Requires the acquisition and use of a Requires the acquisition and use of a complex set of skillscomplex set of skillsAbility to access & understand the Ability to access & understand the

technologytechnologyAbility to locate and critically evaluate Ability to locate and critically evaluate

relevant materialrelevant material = Benefits of health sciences librarians!= Benefits of health sciences librarians!

Internet & other virtual media, cont’dInternet & other virtual media, cont’d Development & Introduction of TechnologiesDevelopment & Introduction of Technologies

Requires the acquisition and use of a Requires the acquisition and use of a complex set of skillscomplex set of skillsAbility to access & understand the Ability to access & understand the

technologytechnologyAbility to locate and critically evaluate Ability to locate and critically evaluate

relevant materialrelevant material = Benefits of health sciences librarians!= Benefits of health sciences librarians!

1. Online cancer communication: meeting the literacy, cultural and linguistic needs of diverse audiences. Neuhauser L, Patient Educ Couns. 6/08; 2. Evidence-based

resources and the role of librarians in developing evidence-based practice curricula. Klem ML. J Prof Nurs. 12/05

Tools for HCLTools for HCLTools for HCLTools for HCL Websites, including click-key analysisWebsites, including click-key analysis Written materialsWritten materials ScalesScales Surveys & questionnairesSurveys & questionnaires Focus groups & interviews Focus groups & interviews Electronic data capture with a central system that Electronic data capture with a central system that

allows for allows for real-time interaction as well as virtual real-time interaction as well as virtual review and analysis:review and analysis: Hand Held Device or digital penHand Held Device or digital pen IVR (Interactive Voice Response)IVR (Interactive Voice Response) Internet WebInternet Web Medical devices (glucometers, breathalyzers)Medical devices (glucometers, breathalyzers)

Websites, including click-key analysisWebsites, including click-key analysis Written materialsWritten materials ScalesScales Surveys & questionnairesSurveys & questionnaires Focus groups & interviews Focus groups & interviews Electronic data capture with a central system that Electronic data capture with a central system that

allows for allows for real-time interaction as well as virtual real-time interaction as well as virtual review and analysis:review and analysis: Hand Held Device or digital penHand Held Device or digital pen IVR (Interactive Voice Response)IVR (Interactive Voice Response) Internet WebInternet Web Medical devices (glucometers, breathalyzers)Medical devices (glucometers, breathalyzers)

http://www.phtcorp.com/why_epro/what_is_epro/


TraineesTrainees need to be competent in health literacy need to be competent in health literacy Example: ACGME Core CompetenciesExample: ACGME Core Competencies

Medical KnowledgeMedical KnowledgePractice-based Learning and ImprovementPractice-based Learning and Improvement

appraise and assimilate scientific evidenceappraise and assimilate scientific evidenceInterpersonal and Communication SkillsInterpersonal and Communication Skills

effective exchange of information and effective exchange of information and collaboration with patients, their families, collaboration with patients, their families, and health professionalsand health professionals

Systems-based PracticeSystems-based Practiceresponsiveness to the system of health careresponsiveness to the system of health careability to call effectively on resources and ability to call effectively on resources and

optimize inter-professional teamsoptimize inter-professional teams

TraineesTrainees need to be competent in health literacy need to be competent in health literacy Example: ACGME Core CompetenciesExample: ACGME Core Competencies

Medical KnowledgeMedical KnowledgePractice-based Learning and ImprovementPractice-based Learning and Improvement

appraise and assimilate scientific evidenceappraise and assimilate scientific evidenceInterpersonal and Communication SkillsInterpersonal and Communication Skills

effective exchange of information and effective exchange of information and collaboration with patients, their families, collaboration with patients, their families, and health professionalsand health professionals

Systems-based PracticeSystems-based Practiceresponsiveness to the system of health careresponsiveness to the system of health careability to call effectively on resources and ability to call effectively on resources and

optimize inter-professional teamsoptimize inter-professional teams

Accreditation Council for Graduate Medical Education : www.acgme.org; Patient-doctor communication. Teutsch C. Med Clin North Am 2003; 2.

ww.acgme.org/outcome/comp/GeneralCompetenciesStandards21307.pdf

http://www.acgme.org/


Patient & CaregiverPatient & CaregiverCaregivers play a significant role in diagnosis & treatment.Caregivers play a significant role in diagnosis & treatment.The extent to which caregivers can comprehend the health The extent to which caregivers can comprehend the health

information they receive is criticalinformation they receive is criticalTargeted, practical info provided directly to caregiversTargeted, practical info provided directly to caregiversCaregivers & patients interactions need improvementCaregivers & patients interactions need improvement

Modern healthcare demands a high level of health literacy to Modern healthcare demands a high level of health literacy to successfully manage diseasesuccessfully manage diseaseOlder adults may be at a distinct disadvantageOlder adults may be at a distinct disadvantageNew strategies are needed to compensate for these lossesNew strategies are needed to compensate for these losses

creating a health care environment of shared meaning creating a health care environment of shared meaning and understanding tailored to the aging patientand understanding tailored to the aging patient

Patient & CaregiverPatient & CaregiverCaregivers play a significant role in diagnosis & treatment.Caregivers play a significant role in diagnosis & treatment.The extent to which caregivers can comprehend the health The extent to which caregivers can comprehend the health

information they receive is criticalinformation they receive is criticalTargeted, practical info provided directly to caregiversTargeted, practical info provided directly to caregiversCaregivers & patients interactions need improvementCaregivers & patients interactions need improvement

Modern healthcare demands a high level of health literacy to Modern healthcare demands a high level of health literacy to successfully manage diseasesuccessfully manage diseaseOlder adults may be at a distinct disadvantageOlder adults may be at a distinct disadvantageNew strategies are needed to compensate for these lossesNew strategies are needed to compensate for these losses

creating a health care environment of shared meaning creating a health care environment of shared meaning and understanding tailored to the aging patientand understanding tailored to the aging patient

1. Understanding the impact of family caregiver cancer literacy on patient health outcomes. Bevan JL, Patient Educ Couns. 6/08; 2. Health literacy and cancer

communication with older adults. Sparks L, Patient Educ Couns. 4/08


Health Sciences LibrarianHealth Sciences LibrarianIdentifying & optimizing skillsIdentifying & optimizing skills

Basis for a training program model that reflects changes Basis for a training program model that reflects changes in both health care delivery & information technology in both health care delivery & information technology

All surveyed groups rated as most important:All surveyed groups rated as most important:Personality characteristicsPersonality characteristicsSkills: Understanding of the health sciences; Education; Skills: Understanding of the health sciences; Education;

Research; Technical skillsResearch; Technical skills

Continuing professional development is requiredContinuing professional development is requiredEmphasis on teaching skills, outreach work, marketing Emphasis on teaching skills, outreach work, marketing

and promotion, research skills and methods, subject and promotion, research skills and methods, subject knowledge and terminology, and management skills.knowledge and terminology, and management skills.

Health Sciences LibrarianHealth Sciences LibrarianIdentifying & optimizing skillsIdentifying & optimizing skills

Basis for a training program model that reflects changes Basis for a training program model that reflects changes in both health care delivery & information technology in both health care delivery & information technology

All surveyed groups rated as most important:All surveyed groups rated as most important:Personality characteristicsPersonality characteristicsSkills: Understanding of the health sciences; Education; Skills: Understanding of the health sciences; Education;

Research; Technical skillsResearch; Technical skills

Continuing professional development is requiredContinuing professional development is requiredEmphasis on teaching skills, outreach work, marketing Emphasis on teaching skills, outreach work, marketing

and promotion, research skills and methods, subject and promotion, research skills and methods, subject knowledge and terminology, and management skills.knowledge and terminology, and management skills.

1. Preparing librarians to meet the challenges of today's health care environment. Giuse NB, et al. J Am Med Inform Assoc. 1/97. 2. The education and training needs of health librarians - the generalist versus specialist dilemma. Petrinic T, Health Info Libr J. 9/07


Health Science LibrariansHealth Science LibrariansProvide information literacy training to health Provide information literacy training to health

care professionals, patients, caregiverscare professionals, patients, caregivers(AND SO MUCH MORE)(AND SO MUCH MORE)Research is needed to show it improves Research is needed to show it improves

clinicians' information skills & patient careclinicians' information skills & patient careSelecting appropriate measures to evaluate Selecting appropriate measures to evaluate

the impact of trainingthe impact of trainingDemonstrating validity and reliabilityDemonstrating validity and reliabilityProviding guidance to health librarians & Providing guidance to health librarians &

health care systemhealth care system

Health Science LibrariansHealth Science LibrariansProvide information literacy training to health Provide information literacy training to health

care professionals, patients, caregiverscare professionals, patients, caregivers(AND SO MUCH MORE)(AND SO MUCH MORE)Research is needed to show it improves Research is needed to show it improves

clinicians' information skills & patient careclinicians' information skills & patient careSelecting appropriate measures to evaluate Selecting appropriate measures to evaluate

the impact of trainingthe impact of trainingDemonstrating validity and reliabilityDemonstrating validity and reliabilityProviding guidance to health librarians & Providing guidance to health librarians &

health care systemhealth care system

Evaluating information skills training in health libraries: a systematic review. Brettle A; Health Info Libr J. 12/07

Health Care Literacy Around the WorldHealth Care Literacy Around the WorldHealth Care Literacy Around the WorldHealth Care Literacy Around the World

http://www.webmd.com/

HCL in Health Care ReformHCL in Health Care ReformHCL in Health Care ReformHCL in Health Care Reform

Patient Protection & Affordable Health Care Act (PPACA)Patient Protection & Affordable Health Care Act (PPACA) HundredsHundreds of New Committees and Mandates of New Committees and Mandates Accountable care organizations (ACOs)Accountable care organizations (ACOs)

quality metrics = $quality metrics = $ New Metrics Needed New Metrics Needed (Seek provider input)(Seek provider input)

Patient individualization (HCL)Patient individualization (HCL)““Prioritization” = $, academic, clinical, Prioritization” = $, academic, clinical,

technology incorporation, etc.technology incorporation, etc.

Patient Protection & Affordable Health Care Act (PPACA)Patient Protection & Affordable Health Care Act (PPACA) HundredsHundreds of New Committees and Mandates of New Committees and Mandates Accountable care organizations (ACOs)Accountable care organizations (ACOs)

quality metrics = $quality metrics = $ New Metrics Needed New Metrics Needed (Seek provider input)(Seek provider input)

Patient individualization (HCL)Patient individualization (HCL)““Prioritization” = $, academic, clinical, Prioritization” = $, academic, clinical,

technology incorporation, etc.technology incorporation, etc.

Patient Protection and Affordable Care Act (PPACA) of 2010, (P.L. 111-148; H.R. 3590, Sec. 10103(c)-Sec. 2709.); ASCO POST & Proceedings,

2010

Resources:Resources:

www.healthcare.gov www.healthcare.gov

& specialty society & specialty society websiteswebsites

HCL in PPACAHCL in PPACAHCL in PPACAHCL in PPACA

Patient-Centered Research Outcomes InstitutePatient-Centered Research Outcomes InstituteAssist patients, clinicians, purchasers, & policy-makersAssist patients, clinicians, purchasers, & policy-makers Improve evidence on prevention, diagnosis, & treatment Improve evidence on prevention, diagnosis, & treatment

Identify, prioritize, & carry out “the agenda”Identify, prioritize, & carry out “the agenda”Includes trial design & conductanceIncludes trial design & conductance

““Standing Methodology Committee”Standing Methodology Committee”Goal = comparative effectivenessGoal = comparative effectiveness

Center for Medicare & Medicaid InnovationCenter for Medicare & Medicaid Innovation Interagency Working Group on Health Care QualityInteragency Working Group on Health Care Quality Consumer Advocacy CouncilConsumer Advocacy Council Advisory Committees On Public Education (various)Advisory Committees On Public Education (various) Nat. Prevention, Health Promotion & Public Health CouncilNat. Prevention, Health Promotion & Public Health Council

Patient-Centered Research Outcomes InstitutePatient-Centered Research Outcomes InstituteAssist patients, clinicians, purchasers, & policy-makersAssist patients, clinicians, purchasers, & policy-makers Improve evidence on prevention, diagnosis, & treatment Improve evidence on prevention, diagnosis, & treatment

Identify, prioritize, & carry out “the agenda”Identify, prioritize, & carry out “the agenda”Includes trial design & conductanceIncludes trial design & conductance

““Standing Methodology Committee”Standing Methodology Committee”Goal = comparative effectivenessGoal = comparative effectiveness

Center for Medicare & Medicaid InnovationCenter for Medicare & Medicaid Innovation Interagency Working Group on Health Care QualityInteragency Working Group on Health Care Quality Consumer Advocacy CouncilConsumer Advocacy Council Advisory Committees On Public Education (various)Advisory Committees On Public Education (various) Nat. Prevention, Health Promotion & Public Health CouncilNat. Prevention, Health Promotion & Public Health Council

Patient Protection and Affordable Care Act (PPACA) of 2010

Health Care Literacy Around the USHealth Care Literacy Around the USHealth Care Literacy Around the USHealth Care Literacy Around the US

Academic Examples of Health Literacy ProgramsAcademic Examples of Health Literacy Programs University of Wisconsin, Madison’s Comprehensive University of Wisconsin, Madison’s Comprehensive

Health Enhancement Support System (CHESS™)Health Enhancement Support System (CHESS™)http://chess.wisc.edu/chess/http://chess.wisc.edu/chess/

Computer-based system of integrated services designed to Computer-based system of integrated services designed to help individuals cope with a health crisis or medical concernhelp individuals cope with a health crisis or medical concern

Research has demonstrated an increased quality of life in Research has demonstrated an increased quality of life in groups of cancer patientsgroups of cancer patients

http://chess.wisc.edu/chess/publications/archives_prj.aspxhttp://chess.wisc.edu/chess/publications/archives_prj.aspx

Dartmouth-Hitchkock Medical Center’s Shared Dartmouth-Hitchkock Medical Center’s Shared Decision Making CenterDecision Making Center

http://www.dhmc.orghttp://www.dhmc.org

Many others........YOURS?Many others........YOURS?

Academic Examples of Health Literacy ProgramsAcademic Examples of Health Literacy Programs University of Wisconsin, Madison’s Comprehensive University of Wisconsin, Madison’s Comprehensive

Health Enhancement Support System (CHESS™)Health Enhancement Support System (CHESS™)http://chess.wisc.edu/chess/http://chess.wisc.edu/chess/

Computer-based system of integrated services designed to Computer-based system of integrated services designed to help individuals cope with a health crisis or medical concernhelp individuals cope with a health crisis or medical concern

Research has demonstrated an increased quality of life in Research has demonstrated an increased quality of life in groups of cancer patientsgroups of cancer patients

http://chess.wisc.edu/chess/publications/archives_prj.aspxhttp://chess.wisc.edu/chess/publications/archives_prj.aspx

Dartmouth-Hitchkock Medical Center’s Shared Dartmouth-Hitchkock Medical Center’s Shared Decision Making CenterDecision Making Center

http://www.dhmc.orghttp://www.dhmc.org

Many others........YOURS?Many others........YOURS?

Health Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UF

Gwen Lombard, Erin Dunbar, Beth Layton*, Nita Gwen Lombard, Erin Dunbar, Beth Layton*, Nita Ferree, (Salvatore Savona, many others) *now, OHFerree, (Salvatore Savona, many others) *now, OH

Health Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UFDiverse Collaborations:Diverse Collaborations: Health ProfessionsHealth Professions College of Public Health & Health ProfessionsCollege of Public Health & Health Professions Department of Behavioral Science and Community HealthDepartment of Behavioral Science and Community Health Journalism & CommunicationJournalism & Communication Preston A. Wells, Jr. Center for Brain Tumor TherapyPreston A. Wells, Jr. Center for Brain Tumor Therapy Department of Neurological SurgeryDepartment of Neurological Surgery UF Shands Cancer Center & Education & Resource CenterUF Shands Cancer Center & Education & Resource Center Health Science LibrariesHealth Science Libraries Volunteer patient or caregiverVolunteer patient or caregiver Resident or other traineeResident or other trainee Social worker Social worker Department of PharmacyDepartment of Pharmacy Nursing Services, etc.Nursing Services, etc.

Diverse Collaborations:Diverse Collaborations: Health ProfessionsHealth Professions College of Public Health & Health ProfessionsCollege of Public Health & Health Professions Department of Behavioral Science and Community HealthDepartment of Behavioral Science and Community Health Journalism & CommunicationJournalism & Communication Preston A. Wells, Jr. Center for Brain Tumor TherapyPreston A. Wells, Jr. Center for Brain Tumor Therapy Department of Neurological SurgeryDepartment of Neurological Surgery UF Shands Cancer Center & Education & Resource CenterUF Shands Cancer Center & Education & Resource Center Health Science LibrariesHealth Science Libraries Volunteer patient or caregiverVolunteer patient or caregiver Resident or other traineeResident or other trainee Social worker Social worker Department of PharmacyDepartment of Pharmacy Nursing Services, etc.Nursing Services, etc.

Health Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UFHealth Care Literacy Initiatives at UF Identification of NeedsIdentification of Needs

Patient, caregiver, trainees, health care Patient, caregiver, trainees, health care professionals, librarians, hospital, library, etcprofessionals, librarians, hospital, library, etc

Pilot dataPilot dataFocused groups, surveysFocused groups, surveys

Create & Promote ConnectionsCreate & Promote Connections Implement ProgramsImplement Programs Measure Effects ScientificallyMeasure Effects Scientifically RefinementRefinement

Advisory committees, research resultsAdvisory committees, research results Establish “Best Practice” ModelEstablish “Best Practice” Model FundingFunding

Identification of NeedsIdentification of NeedsPatient, caregiver, trainees, health care Patient, caregiver, trainees, health care

professionals, librarians, hospital, library, etcprofessionals, librarians, hospital, library, etc Pilot dataPilot data

Focused groups, surveysFocused groups, surveys Create & Promote ConnectionsCreate & Promote Connections Implement ProgramsImplement Programs Measure Effects ScientificallyMeasure Effects Scientifically RefinementRefinement

Advisory committees, research resultsAdvisory committees, research results Establish “Best Practice” ModelEstablish “Best Practice” Model FundingFunding


Needs & Goals of UFNeeds & Goals of UF Create unique learning partnershipsCreate unique learning partnerships Promote proactive inquiry & self-directed learningPromote proactive inquiry & self-directed learning

““Information Prescription”Information Prescription” Comprehensive, High-quality, Up-to-dateComprehensive, High-quality, Up-to-date

““Clinical Informationalist” (Health Info Engineer)Clinical Informationalist” (Health Info Engineer) Point-of-need, help for diverse needsPoint-of-need, help for diverse needs

““Immersed” Librarian (Sewell Foundation Grant)Immersed” Librarian (Sewell Foundation Grant) Virtual, TransferableVirtual, Transferable

““Mobile Education Cart” (wireless computer/printer)Mobile Education Cart” (wireless computer/printer)““Informed Cancer Patients” Website & novel Informed Cancer Patients” Website & novel

educational materialseducational materials

Needs & Goals of UFNeeds & Goals of UF Create unique learning partnershipsCreate unique learning partnerships Promote proactive inquiry & self-directed learningPromote proactive inquiry & self-directed learning

““Information Prescription”Information Prescription” Comprehensive, High-quality, Up-to-dateComprehensive, High-quality, Up-to-date

““Clinical Informationalist” (Health Info Engineer)Clinical Informationalist” (Health Info Engineer) Point-of-need, help for diverse needsPoint-of-need, help for diverse needs

““Immersed” Librarian (Sewell Foundation Grant)Immersed” Librarian (Sewell Foundation Grant) Virtual, TransferableVirtual, Transferable

““Mobile Education Cart” (wireless computer/printer)Mobile Education Cart” (wireless computer/printer)““Informed Cancer Patients” Website & novel Informed Cancer Patients” Website & novel

educational materialseducational materials

Unmet Need Addressed:Unmet Need Addressed:HCL for Brain TumorHCL for Brain Tumor

Patients, Caregivers, House-staff, StaffPatients, Caregivers, House-staff, Staff

Unmet Need Addressed:Unmet Need Addressed:HCL for Brain TumorHCL for Brain Tumor

Patients, Caregivers, House-staff, StaffPatients, Caregivers, House-staff, Staff

Focus Group ResearchFocus Group Research Internet: “Informed Cancer Patients” programInternet: “Informed Cancer Patients” program ““Info Rx” & “Resource Rx” interactive questionnairesInfo Rx” & “Resource Rx” interactive questionnaires Mobile education cart & education roomMobile education cart & education room Grant applicationsGrant applications House-staff educationHouse-staff education initiatives

Focus Group ResearchFocus Group Research Internet: “Informed Cancer Patients” programInternet: “Informed Cancer Patients” program ““Info Rx” & “Resource Rx” interactive questionnairesInfo Rx” & “Resource Rx” interactive questionnaires Mobile education cart & education roomMobile education cart & education room Grant applicationsGrant applications House-staff educationHouse-staff education initiatives

Exploring the Health Care Literacy Needs of Exploring the Health Care Literacy Needs of Newly Diagnosed Brain Cancer Patients Newly Diagnosed Brain Cancer Patients (BCPs) From the Perspectives of Both (BCPs) From the Perspectives of Both

Patients & Health Care Providers (HCPs)Patients & Health Care Providers (HCPs)

Exploring the Health Care Literacy Needs of Exploring the Health Care Literacy Needs of Newly Diagnosed Brain Cancer Patients Newly Diagnosed Brain Cancer Patients (BCPs) From the Perspectives of Both (BCPs) From the Perspectives of Both

Patients & Health Care Providers (HCPs)Patients & Health Care Providers (HCPs)Design/Methods:Design/Methods: Qualitative theme-saturation analysis Qualitative theme-saturation analysis

(validated in HCL)(validated in HCL) ~1 hr interviews by non-medical ~1 hr interviews by non-medical

investigators using templated investigators using templated questions & discussionquestions & discussion

Sequential blinded analyses until Sequential blinded analyses until consensusconsensus

To date, 3 of many planned focus To date, 3 of many planned focus groups groups

are reportedare reported

Design/Methods:Design/Methods: Qualitative theme-saturation analysis Qualitative theme-saturation analysis

(validated in HCL)(validated in HCL) ~1 hr interviews by non-medical ~1 hr interviews by non-medical

investigators using templated investigators using templated questions & discussionquestions & discussion

Sequential blinded analyses until Sequential blinded analyses until consensusconsensus

To date, 3 of many planned focus To date, 3 of many planned focus groups groups

are reportedare reported

Qual. Methods for Health Care Res, 06; Sewell Scholarship; POST article; Qual. Methods for Health Care Res, 06; Sewell Scholarship; POST article; Student Scholarships; Presentations: Nat. MLA; 2 Florida Lib. Assoc. Student Scholarships; Presentations: Nat. MLA; 2 Florida Lib. Assoc. Submissions: American Academy of Neurology 2011 Annual Meeting; Submissions: American Academy of Neurology 2011 Annual Meeting;

National Library Assoc ‘11National Library Assoc ‘11

Focus Group:Focus Group:Evaluating HCL Needs in Brain Evaluating HCL Needs in Brain

CancerCancer

Focus Group:Focus Group:Evaluating HCL Needs in Brain Evaluating HCL Needs in Brain

CancerCancer

IRB approved, interdisciplinaryIRB approved, interdisciplinary Audio-taped, transcribedAudio-taped, transcribed 36036000 Audience: patient, caregiver, house-staff, Audience: patient, caregiver, house-staff,

staffstaff Query their impressions of the impact of Query their impressions of the impact of

various tools and infovarious tools and info Theme saturation Theme saturation pilot data pilot data Hypothesis-generating for more definitive Hypothesis-generating for more definitive

researchresearch

IRB approved, interdisciplinaryIRB approved, interdisciplinary Audio-taped, transcribedAudio-taped, transcribed 36036000 Audience: patient, caregiver, house-staff, Audience: patient, caregiver, house-staff,

staffstaff Query their impressions of the impact of Query their impressions of the impact of

various tools and infovarious tools and info Theme saturation Theme saturation pilot data pilot data Hypothesis-generating for more definitive Hypothesis-generating for more definitive

researchresearch

Qualitative ResultsQualitative ResultsQualitative ResultsQualitative Results

Results:Results: HCPs & BCPs were HCPs & BCPs were distinctdistinct in all questions. in all questions. BCPs’ HCL needs BCPs’ HCL needs changedchanged throughout time & were throughout time & were

uniqueunique from their perception of from their perception of caregivers’ caregivers’ HCL needs HCL needs Notable differences at diagnosis included:Notable differences at diagnosis included:

BCP’s HCL need to understand/improve BCP’s HCL need to understand/improve symptomssymptoms, , provider/hospital quality & provider/hospital quality & immediateimmediate medical events medical events

Caregivers’ perceived HCL need to understand/improve Caregivers’ perceived HCL need to understand/improve treatment & long-term treatment & long-term prognosisprognosis

HCPs’ perceived HCL needs for BCPs included a distinct HCPs’ perceived HCL needs for BCPs included a distinct set of set of immediateimmediate medical events & medical events & insufficiencyinsufficiency in in understanding +/- improving non-medical needsunderstanding +/- improving non-medical needs

Results:Results: HCPs & BCPs were HCPs & BCPs were distinctdistinct in all questions. in all questions. BCPs’ HCL needs BCPs’ HCL needs changedchanged throughout time & were throughout time & were

uniqueunique from their perception of from their perception of caregivers’ caregivers’ HCL needs HCL needs Notable differences at diagnosis included:Notable differences at diagnosis included:

BCP’s HCL need to understand/improve BCP’s HCL need to understand/improve symptomssymptoms, , provider/hospital quality & provider/hospital quality & immediateimmediate medical events medical events

Caregivers’ perceived HCL need to understand/improve Caregivers’ perceived HCL need to understand/improve treatment & long-term treatment & long-term prognosisprognosis

HCPs’ perceived HCL needs for BCPs included a distinct HCPs’ perceived HCL needs for BCPs included a distinct set of set of immediateimmediate medical events & medical events & insufficiencyinsufficiency in in understanding +/- improving non-medical needsunderstanding +/- improving non-medical needs

Outcomes for HCL InitiativesOutcomes for HCL InitiativesOutcomes for HCL InitiativesOutcomes for HCL Initiatives

Current: Current: Unique interdisciplinary collaborationUnique interdisciplinary collaboration

Presentations, grant applicationsPresentations, grant applications Resource justificationResource justification

Librarian & social worker positions, technology Librarian & social worker positions, technology In development:In development: Add direct caregiver & house-staff perspectivesAdd direct caregiver & house-staff perspectives Add imbedded analysis of technology useAdd imbedded analysis of technology useFuture:Future: New metrics for efficacy of health literacy programsNew metrics for efficacy of health literacy programs Risk management, workflow, economic, quality careRisk management, workflow, economic, quality care

Current: Current: Unique interdisciplinary collaborationUnique interdisciplinary collaboration

Presentations, grant applicationsPresentations, grant applications Resource justificationResource justification

Librarian & social worker positions, technology Librarian & social worker positions, technology In development:In development: Add direct caregiver & house-staff perspectivesAdd direct caregiver & house-staff perspectives Add imbedded analysis of technology useAdd imbedded analysis of technology useFuture:Future: New metrics for efficacy of health literacy programsNew metrics for efficacy of health literacy programs Risk management, workflow, economic, quality careRisk management, workflow, economic, quality care

Sewell Scholarship; POST article; Student Scholarships; Presentations: Nat. MLA; 2 Florida Lib. Assoc. Submissions: American Academy of

Neurology 2011 Annual Meeting; National Library Assoc ‘11

Resources for Health Care Literacy:Resources for Health Care Literacy:

UF Health Science Center WebpageUF Health Science Center Webpagewww.library.health.ufl.edu; including: Informed Brain Cancer www.library.health.ufl.edu; including: Informed Brain Cancer

Patient sitePatient site Patient-Centered Research Outcomes Institute’s sitePatient-Centered Research Outcomes Institute’s site

www.healthcare.govwww.healthcare.gov University of Wisconsin, Madison’s Comprehensive Health University of Wisconsin, Madison’s Comprehensive Health

Enhancement Support System (CHESS™)Enhancement Support System (CHESS™)Computer-based system of integrated services designed to Computer-based system of integrated services designed to

help individuals cope with a health crisis help individuals cope with a health crisis There research has demonstrated an increased quality of life There research has demonstrated an increased quality of life

in groups of cancer patientsin groups of cancer patientshttp://chess.wisc.edu/chess/publications/http://chess.wisc.edu/chess/publications/

archives_prj.aspxarchives_prj.aspx Dartmouth-Hitchkock Medical Center’s Shared Decision Making Dartmouth-Hitchkock Medical Center’s Shared Decision Making

CenterCenterhttp://www.dhmc.orghttp://www.dhmc.org

Resources for Health Care Literacy:Resources for Health Care Literacy:

UF Health Science Center WebpageUF Health Science Center Webpagewww.library.health.ufl.edu; including: Informed Brain Cancer www.library.health.ufl.edu; including: Informed Brain Cancer

Patient sitePatient site Patient-Centered Research Outcomes Institute’s sitePatient-Centered Research Outcomes Institute’s site

www.healthcare.govwww.healthcare.gov University of Wisconsin, Madison’s Comprehensive Health University of Wisconsin, Madison’s Comprehensive Health

Enhancement Support System (CHESS™)Enhancement Support System (CHESS™)Computer-based system of integrated services designed to Computer-based system of integrated services designed to

help individuals cope with a health crisis help individuals cope with a health crisis There research has demonstrated an increased quality of life There research has demonstrated an increased quality of life

in groups of cancer patientsin groups of cancer patientshttp://chess.wisc.edu/chess/publications/http://chess.wisc.edu/chess/publications/

archives_prj.aspxarchives_prj.aspx Dartmouth-Hitchkock Medical Center’s Shared Decision Making Dartmouth-Hitchkock Medical Center’s Shared Decision Making

CenterCenterhttp://www.dhmc.orghttp://www.dhmc.org

Unmet Need Addressed:Unmet Need Addressed:Aligning Healthcare Needs & ResourcesAligning Healthcare Needs & Resources

Unmet Need Addressed:Unmet Need Addressed:Aligning Healthcare Needs & ResourcesAligning Healthcare Needs & Resources

http://www.sacramentoexecutive.com/http://www.sacramentoexecutive.com/Cartoon6prescription_dosage.jpg; Cartoon6prescription_dosage.jpg; www.knockknock.biz/.../product_12056_l1.jpg; REFS; REFS

Increasing disparity Increasing disparity between needs & between needs & resourcesresources

Inadequate data to justify Inadequate data to justify staff, resources, etc ---- staff, resources, etc ---- bothboth

immediate and long-termimmediate and long-term HCL is under-utilized and HCL is under-utilized and

potentially powerfulpotentially powerful

Increasing disparity Increasing disparity between needs & between needs & resourcesresources

Inadequate data to justify Inadequate data to justify staff, resources, etc ---- staff, resources, etc ---- bothboth

immediate and long-termimmediate and long-term HCL is under-utilized and HCL is under-utilized and

potentially powerfulpotentially powerful

http://www.knockknock.biz/.../product_12056_l1.jpg

HCL Examples for Patients & HCL Examples for Patients & CaregiversCaregivers

HCL Examples for Patients & HCL Examples for Patients & CaregiversCaregivers

Not complete, dynamic, individualized, nor specificNot complete, dynamic, individualized, nor specific

http://www.webmd.com/

Information RxInformation RxInformation RxInformation Rx I amI am: a patient:___ a caregiver:___ an interested individual:___: a patient:___ a caregiver:___ an interested individual:___ I would like more information on: I would like more information on:

Disease: ______________________Disease: ______________________Risk factors____, diagnosis____, staging____, treatment at Risk factors____, diagnosis____, staging____, treatment at

diagnosis____, treatment at recurrence____, monitoring____, diagnosis____, treatment at recurrence____, monitoring____, prognosis____, other:____prognosis____, other:____

Being a patient and/or Caregiver:Being a patient and/or Caregiver:Support____; Home care_; hospice care_; End of lifeSupport____; Home care_; hospice care_; End of life

WellbeingWellbeingMemory___; Personality___; Emotional changes___; Memory___; Personality___; Emotional changes___;

Coping___; Talking to children or relative___; Changes in Coping___; Talking to children or relative___; Changes in self-perception or how others perceive you___; Other___self-perception or how others perceive you___; Other___

Energy:Energy:Fatigue___; Nutrition while receiving treatment; Changes in Fatigue___; Nutrition while receiving treatment; Changes in

taste___; Changes in Bowel Habits___taste___; Changes in Bowel Habits___ Therapy:Therapy:

Specific medicines or treatments (uses, risks/benefits, Specific medicines or treatments (uses, risks/benefits, results:______; Use of alternative medicines___results:______; Use of alternative medicines___

Comfort:Comfort:Quality of Life____; specific symptoms___Quality of Life____; specific symptoms___

Rehabilitation:Rehabilitation:Exercise___; Home or Facility Rehab___; Other___Exercise___; Home or Facility Rehab___; Other___

I amI am: a patient:___ a caregiver:___ an interested individual:___: a patient:___ a caregiver:___ an interested individual:___ I would like more information on: I would like more information on:

Disease: ______________________Disease: ______________________Risk factors____, diagnosis____, staging____, treatment at Risk factors____, diagnosis____, staging____, treatment at

diagnosis____, treatment at recurrence____, monitoring____, diagnosis____, treatment at recurrence____, monitoring____, prognosis____, other:____prognosis____, other:____

Being a patient and/or Caregiver:Being a patient and/or Caregiver:Support____; Home care_; hospice care_; End of lifeSupport____; Home care_; hospice care_; End of life

WellbeingWellbeingMemory___; Personality___; Emotional changes___; Memory___; Personality___; Emotional changes___;

Coping___; Talking to children or relative___; Changes in Coping___; Talking to children or relative___; Changes in self-perception or how others perceive you___; Other___self-perception or how others perceive you___; Other___

Energy:Energy:Fatigue___; Nutrition while receiving treatment; Changes in Fatigue___; Nutrition while receiving treatment; Changes in

taste___; Changes in Bowel Habits___taste___; Changes in Bowel Habits___ Therapy:Therapy:

Specific medicines or treatments (uses, risks/benefits, Specific medicines or treatments (uses, risks/benefits, results:______; Use of alternative medicines___results:______; Use of alternative medicines___

Comfort:Comfort:Quality of Life____; specific symptoms___Quality of Life____; specific symptoms___

Rehabilitation:Rehabilitation:Exercise___; Home or Facility Rehab___; Other___Exercise___; Home or Facility Rehab___; Other___

Information RxInformation RxInformation RxInformation Rx When seeking education or assistance for health issuesWhen seeking education or assistance for health issues I consider myself: I consider myself:

Beginner___; Somewhat skilled___; Very skilled___Beginner___; Somewhat skilled___; Very skilled___ I consider it:I consider it:

Not stressful___; Somewhat stressful___; Very stressful___Not stressful___; Somewhat stressful___; Very stressful___ I would like assistance and/or education with:I would like assistance and/or education with: Computer skills: Computer skills:

internet navigating, UF-HSC Library resources, other:_______internet navigating, UF-HSC Library resources, other:_______ Searching for: Searching for:

clinical trials:__; health information___; Shands-UF resources:___; clinical trials:__; health information___; Shands-UF resources:___; Resources (community, state, USA):____Resources (community, state, USA):____

I would like to be contacted in the future for:I would like to be contacted in the future for: YES/NO: I am ok being contacted about updates on:______ YES/NO: I am ok being contacted about updates on:______

New services/programs at UFHSC Library or UF-Shands; New services/programs at UFHSC Library or UF-Shands; Other____Other____

The best way to contact me isThe best way to contact me is:_____________:_____________ I would like the following recourses/services available in the I would like the following recourses/services available in the

future_____future_____

When seeking education or assistance for health issuesWhen seeking education or assistance for health issues I consider myself: I consider myself:

Beginner___; Somewhat skilled___; Very skilled___Beginner___; Somewhat skilled___; Very skilled___ I consider it:I consider it:

Not stressful___; Somewhat stressful___; Very stressful___Not stressful___; Somewhat stressful___; Very stressful___ I would like assistance and/or education with:I would like assistance and/or education with: Computer skills: Computer skills:

internet navigating, UF-HSC Library resources, other:_______internet navigating, UF-HSC Library resources, other:_______ Searching for: Searching for:

clinical trials:__; health information___; Shands-UF resources:___; clinical trials:__; health information___; Shands-UF resources:___; Resources (community, state, USA):____Resources (community, state, USA):____

I would like to be contacted in the future for:I would like to be contacted in the future for: YES/NO: I am ok being contacted about updates on:______ YES/NO: I am ok being contacted about updates on:______

New services/programs at UFHSC Library or UF-Shands; New services/programs at UFHSC Library or UF-Shands; Other____Other____

The best way to contact me isThe best way to contact me is:_____________:_____________ I would like the following recourses/services available in the I would like the following recourses/services available in the

future_____future_____

Resource RxResource RxResource RxResource Rx Today’s date:Today’s date: ______ ______ Patient’s name is:Patient’s name is: ______________ ______________

Contact #’s are: __The best time to be contacted is: ___Contact #’s are: __The best time to be contacted is: ___ The patient lives in __The patient lives alone or with: __The patient lives in __The patient lives alone or with: __

Diagnosis is:Diagnosis is: ___Date of diagnosis:_____Past medical: __ ___Date of diagnosis:_____Past medical: __ Please check those that may apply to your own concerns & Please check those that may apply to your own concerns &

questions:questions: ___ 1) Coping with physical changes from illness, surgery, treatment___ 1) Coping with physical changes from illness, surgery, treatment ___ 2) Home Care, Medical Equipment needs, Transitions Program, ___ 2) Home Care, Medical Equipment needs, Transitions Program,

HospiceHospice ___ 3) Care Giver issues; emotional support for patient, family, & ___ 3) Care Giver issues; emotional support for patient, family, &

friendsfriends ___ 4) Financial assistance for treatment and/or medications___ 4) Financial assistance for treatment and/or medications ___ 5) Job/work related issues, FMLA, SSD, insurance___ 5) Job/work related issues, FMLA, SSD, insurance ___ 6) Crisis intervention, grief and loss concerns___ 6) Crisis intervention, grief and loss concerns ___ 7) Local lodging, transportation___ 7) Local lodging, transportation ___ 8) Decision making with regard to quality of life & your ___ 8) Decision making with regard to quality of life & your

treatment goalstreatment goals ___ 9) Emotional and/or spiritual support for patient and/or family___ 9) Emotional and/or spiritual support for patient and/or family ___ 10) Other: _____________________ 10) Other: __________________

Today’s date:Today’s date: ______ ______ Patient’s name is:Patient’s name is: ______________ ______________ Contact #’s are: __The best time to be contacted is: ___Contact #’s are: __The best time to be contacted is: ___ The patient lives in __The patient lives alone or with: __The patient lives in __The patient lives alone or with: __

Diagnosis is:Diagnosis is: ___Date of diagnosis:_____Past medical: __ ___Date of diagnosis:_____Past medical: __ Please check those that may apply to your own concerns & Please check those that may apply to your own concerns &

questions:questions: ___ 1) Coping with physical changes from illness, surgery, treatment___ 1) Coping with physical changes from illness, surgery, treatment ___ 2) Home Care, Medical Equipment needs, Transitions Program, ___ 2) Home Care, Medical Equipment needs, Transitions Program,

HospiceHospice ___ 3) Care Giver issues; emotional support for patient, family, & ___ 3) Care Giver issues; emotional support for patient, family, &

friendsfriends ___ 4) Financial assistance for treatment and/or medications___ 4) Financial assistance for treatment and/or medications ___ 5) Job/work related issues, FMLA, SSD, insurance___ 5) Job/work related issues, FMLA, SSD, insurance ___ 6) Crisis intervention, grief and loss concerns___ 6) Crisis intervention, grief and loss concerns ___ 7) Local lodging, transportation___ 7) Local lodging, transportation ___ 8) Decision making with regard to quality of life & your ___ 8) Decision making with regard to quality of life & your

treatment goalstreatment goals ___ 9) Emotional and/or spiritual support for patient and/or family___ 9) Emotional and/or spiritual support for patient and/or family ___ 10) Other: _____________________ 10) Other: __________________

Outcomes for Info Rx & Resource Outcomes for Info Rx & Resource RxRx

Outcomes for Info Rx & Resource Outcomes for Info Rx & Resource RxRx

Current:Current: Justification of staff Justification of staff

Social workers, Librarians, grad student researchers, staffSocial workers, Librarians, grad student researchers, staff Quality & safety data for UF-COM and Hospital committeesQuality & safety data for UF-COM and Hospital committees

Healthcare utilization and unmet needsHealthcare utilization and unmet needs Grant applicationsGrant applications

Future:Future: Assess adequacy of public health information & technologyAssess adequacy of public health information & technology

Tool development for improving & measuring Tool development for improving & measuring Residency and staff educationResidency and staff education FundingFunding

Current:Current: Justification of staff Justification of staff

Social workers, Librarians, grad student researchers, staffSocial workers, Librarians, grad student researchers, staff Quality & safety data for UF-COM and Hospital committeesQuality & safety data for UF-COM and Hospital committees

Healthcare utilization and unmet needsHealthcare utilization and unmet needs Grant applicationsGrant applications

Future:Future: Assess adequacy of public health information & technologyAssess adequacy of public health information & technology

Tool development for improving & measuring Tool development for improving & measuring Residency and staff educationResidency and staff education FundingFunding

Navigating The Road of TreatmentNavigating The Road of TreatmentNavigating The Road of TreatmentNavigating The Road of Treatment

Example of Interactive Education ModuleExample of Interactive Education Module

Department of Neurosurgical SpecialtiesDepartment of Neurosurgical SpecialtiesDr. Erin Dunbar, M.D.Dr. Erin Dunbar, M.D.University of FloridaUniversity of Florida

When/What New Treatment to When/What New Treatment to Start:Start:

When/What New Treatment to When/What New Treatment to Start:Start:

1.1. General ScienceGeneral Science

2.2. General SafetyGeneral Safety

3.3. Goals/Wishes/FearsGoals/Wishes/Fears

4.4. LogisticsLogistics

5.5. StrategyStrategy1.1. Order of TherapyOrder of Therapy

1.1. General ScienceGeneral Science

2.2. General SafetyGeneral Safety

3.3. Goals/Wishes/FearsGoals/Wishes/Fears

4.4. LogisticsLogistics

5.5. StrategyStrategy1.1. Order of TherapyOrder of Therapy

Relatively, equally Relatively, equally likely to be safe or likely to be safe or workwork

Oral, IVOral, IVOutpatient, inpatientOutpatient, inpatientCost/insuranceCost/insuranceFrequencyFrequencyInterested in a Trial? Interested in a Trial? See next slideSee next slideSupport (drivers)Support (drivers)Where located, Where located, availableavailable

Interested in a Trial?Interested in a Trial?Interested in a Trial?Interested in a Trial?Trials PhasesTrials Phases

Phase 1 – Safe?Phase 1 – Safe?Phase 2 – Work?Phase 2 – Work?Phase 3 – Compare to existing therapiesPhase 3 – Compare to existing therapies

Trial TypesTrial TypesTherapeuticTherapeuticSupportive, quality of lifeSupportive, quality of lifeOutcome and risk factorsOutcome and risk factorsTissue analysisTissue analysis

Trials PhasesTrials PhasesPhase 1 – Safe?Phase 1 – Safe?Phase 2 – Work?Phase 2 – Work?Phase 3 – Compare to existing therapiesPhase 3 – Compare to existing therapies

Trial TypesTrial TypesTherapeuticTherapeuticSupportive, quality of lifeSupportive, quality of lifeOutcome and risk factorsOutcome and risk factorsTissue analysisTissue analysis

ToolsToolsto Decide Treatment:to Decide Treatment:

ToolsToolsto Decide Treatment:to Decide Treatment:

ExamsExamsLabsLabsGoals/WishesGoals/WishesSymptomsSymptomsImagingImaging

ExamsExamsLabsLabsGoals/WishesGoals/WishesSymptomsSymptomsImagingImaging

What/When New Treatment to What/When New Treatment to StopStop::

What/When New Treatment to What/When New Treatment to StopStop::

1.1. Do you want it?Do you want it?

2.2. Is it Safe?Is it Safe?

3.3. Is it getting the job done?Is it getting the job done?

1.1. Do you want it?Do you want it?

2.2. Is it Safe?Is it Safe?

3.3. Is it getting the job done?Is it getting the job done?

What your MRI images tell usWhat your MRI images tell usWhat your MRI images tell usWhat your MRI images tell usLeaky Brain = contrast in brain = symptoms from brain leakageLeaky Brain = contrast in brain = symptoms from brain leakage

Intact Blood Brain Barrier Broken Blood Brain Barrier

Contrast Dye

What Your MRI Is Telling UsWhat Your MRI Is Telling UsOnly Shows the Broken Blood Brain BarrierOnly Shows the Broken Blood Brain Barrier

Break is Non-Break is Non-specific:specific:InflammationTumorInfectionStrokeOther

Tumor:Tumor: Known Risks and Known Risks and

SymptomsSymptoms

Tumor:Tumor: Known Risks and Known Risks and

SymptomsSymptoms

Treatment:Treatment: Potential Risks Potential Risks and Symptomsand Symptoms

Treatment:Treatment: Potential Risks Potential Risks and Symptomsand Symptoms

Confusion/SpeechConfusion/SpeechBlood clotsBlood clotsBleedingBleedingLowered immune systemLowered immune system InfectionInfectionFatigueFatigueHeadacheHeadacheSeizureSeizureLoss of function and Loss of function and

sensationsensationMemory/personalityMemory/personality

Confusion/SpeechConfusion/SpeechBlood clotsBlood clotsBleedingBleedingLowered immune systemLowered immune system InfectionInfectionFatigueFatigueHeadacheHeadacheSeizureSeizureLoss of function and Loss of function and

sensationsensationMemory/personalityMemory/personality

Lower blood countsLower blood counts InfectionInfectionFatigueFatigueNausea or constipationNausea or constipationSpecific organ toxicitiesSpecific organ toxicitiesBlood clotsBlood clotsBleedingBleeding

Lower blood countsLower blood counts InfectionInfectionFatigueFatigueNausea or constipationNausea or constipationSpecific organ toxicitiesSpecific organ toxicitiesBlood clotsBlood clotsBleedingBleeding


Potential outcomesPotential outcomesimproved sharing of informationimproved sharing of informationlegitimize the impact of health literacy programslegitimize the impact of health literacy programsresource justification for an immersed librarian & resource justification for an immersed librarian &

resourcesresourcesnew models of interdisciplinary collaborationnew models of interdisciplinary collaborationnovel use of the librarian in quality assurance, novel use of the librarian in quality assurance,

quality control, risk management, workflow and quality control, risk management, workflow and resource utilization, etc.resource utilization, etc.

improved satisfaction and quality for all involvedimproved satisfaction and quality for all involvedimproved healthcare outcomesimproved healthcare outcomes

Potential outcomesPotential outcomesimproved sharing of informationimproved sharing of informationlegitimize the impact of health literacy programslegitimize the impact of health literacy programsresource justification for an immersed librarian & resource justification for an immersed librarian &

resourcesresourcesnew models of interdisciplinary collaborationnew models of interdisciplinary collaborationnovel use of the librarian in quality assurance, novel use of the librarian in quality assurance,

quality control, risk management, workflow and quality control, risk management, workflow and resource utilization, etc.resource utilization, etc.

improved satisfaction and quality for all involvedimproved satisfaction and quality for all involvedimproved healthcare outcomesimproved healthcare outcomes

Health Care Literacy in YOUR AREA:Health Care Literacy in YOUR AREA:Health Care Literacy in YOUR AREA:Health Care Literacy in YOUR AREA:

Hospital Websites & Education ProgramHospital Websites & Education ProgramPatient & Staff Satisfaction SurveysPatient & Staff Satisfaction SurveysEducation & Support GroupsEducation & Support GroupsCreating ConnectionsCreating Connections

Nurses, administrators, providers, social workers, Nurses, administrators, providers, social workers,

clergy, counselors, training programs, community clergy, counselors, training programs, community

vendors, advocacy groups…..vendors, advocacy groups…..

Pick a pilot projectPick a pilot projectHave Fun!Have Fun!

Hospital Websites & Education ProgramHospital Websites & Education ProgramPatient & Staff Satisfaction SurveysPatient & Staff Satisfaction SurveysEducation & Support GroupsEducation & Support GroupsCreating ConnectionsCreating Connections

Nurses, administrators, providers, social workers, Nurses, administrators, providers, social workers,

clergy, counselors, training programs, community clergy, counselors, training programs, community

vendors, advocacy groups…..vendors, advocacy groups…..

Pick a pilot projectPick a pilot projectHave Fun!Have Fun!

♦ & & Build on each other’s SuccessesBuild on each other’s Successes

Creating & Expanding ConnectionsCreating & Expanding ConnectionsAre you using our tools?Are you using our tools?Can we use yours?Can we use yours?

Developing ServicesDeveloping Services Scientifically Measuring EffectsScientifically Measuring Effects

Best models?Best models? Outreach modelsOutreach models

How can we leverage?How can we leverage?Feedback?Feedback?Measure impact?Measure impact?

Creating & Expanding ConnectionsCreating & Expanding ConnectionsAre you using our tools?Are you using our tools?Can we use yours?Can we use yours?

Developing ServicesDeveloping Services Scientifically Measuring EffectsScientifically Measuring Effects

Best models?Best models? Outreach modelsOutreach models

How can we leverage?How can we leverage?Feedback?Feedback?Measure impact?Measure impact?

Current & FutureCurrent & Future

Thank you for all you do!Thank you for all you do!

The EndThe End

Thank you for all you do!Thank you for all you do!

The EndThe End


352-273-9000352-273-9000

[email protected]@neurosurgery.ufl.edu

Beyond the SEA - National Tele-discussion Erin M. Dunbar, MD [email protected];...

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