FHSLA 2009 Creating Connections Annual Meeting Erin M. Dunbar, MD

FHSLA 2009 Creating Connections Annual MeetingErin M. Dunbar, MD

FHSLA 2009 Creating Connections Annual MeetingErin M. Dunbar, MD

HEALING BEGINS WITH KNOWLEDGE:HEALING BEGINS WITH KNOWLEDGE:

THE INCREASING IMPORTANCE OFTHE INCREASING IMPORTANCE OF

HEALTH CARE LITERACYHEALTH CARE LITERACY

IN THE MEDICAL TEAMIN THE MEDICAL TEAM

ObjectivesObjectivesObjectivesObjectivesMulti-disciplinary Medicine Example at UFIncreasing Tasks ~ Decreasing Time & ToolsHuge Unmet NeedHealth Care Literacy From & For AllHealth Care Literacy Around the WorldHealth Care Literacy Initiatives at UF

Current & Future

Discussions & QuestionsHow librarians can collaborate with patients &

health care professionals in YOUR area

Multi-disciplinary Medicine Example at UFIncreasing Tasks ~ Decreasing Time & ToolsHuge Unmet NeedHealth Care Literacy From & For AllHealth Care Literacy Around the WorldHealth Care Literacy Initiatives at UF

Current & Future

Discussions & QuestionsHow librarians can collaborate with patients &

health care professionals in YOUR area

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 Diagnosis Anatomy & Function Disease Course Treatments (2nd opinions,

multimodality, standard, trials) Medical Terminology Symptom Management Prognosis Financial Assistance Coping & Emotional Work-related Issues Caregiver & Children Family Dynamics

Diagnosis Anatomy & Function Disease Course Treatments (2nd opinions,

multimodality, standard, trials) Medical Terminology Symptom Management Prognosis Financial Assistance Coping & Emotional Work-related Issues Caregiver & Children Family Dynamics

Increasing Complexity of Care

Decreasing Continuity of Care

Travel difficultiesMoney ImmobilityWorking caregiver

Declining Reimbursement Vanishing Time Allowance

15 minute office visit! Long distances between

Loves ones Unregulated & Enormous

“Resources” InternetBlogs

Increasing Complexity of Care

Decreasing Continuity of Care

Travel difficultiesMoney ImmobilityWorking caregiver

Declining Reimbursement Vanishing Time Allowance

15 minute office visit! Long distances between

Loves ones Unregulated & Enormous

“Resources” InternetBlogs

HEALING BEGINS WITH HEALING BEGINS WITH KNOWLEDGE…..KNOWLEDGE…..

HEALING BEGINS WITH HEALING BEGINS WITH KNOWLEDGE…..KNOWLEDGE…..

…….THE INCREASING .THE INCREASING IMPORTANCE OF HEALTH IMPORTANCE OF HEALTH CARE LITERACY IN THE CARE LITERACY IN THE

MEDICAL TEAMMEDICAL TEAM

…….THE INCREASING .THE INCREASING IMPORTANCE OF HEALTH IMPORTANCE OF HEALTH CARE LITERACY IN THE CARE LITERACY IN THE

MEDICAL TEAMMEDICAL TEAM

Huge Unmet NeedHuge Unmet NeedHuge Unmet NeedHuge Unmet NeedPolicymaker Goals: improve the quality of care &

reduce costs.Medicare claims data from 2003–2004 (11 million)19.6% were re-hospitalized within 30 days.

In 50.2%, there was no bill for a visit to a physician’s office between the time of discharge and re-hospitalization.

34.0% were re-hospitalized within 90 days.Unplanned re-hospitalizations cost Medicare $17.4

billion in 2004 alone. Lack of education during discharge planning and Lack of education during discharge planning and

subsequent physician office visits were implicated as subsequent physician office visits were implicated as causative factors.causative factors.

Policymaker Goals: improve the quality of care & reduce costs.

Medicare claims data from 2003–2004 (11 million)19.6% were re-hospitalized within 30 days.

In 50.2%, there was no bill for a visit to a physician’s office between the time of discharge and re-hospitalization.

34.0% were re-hospitalized within 90 days.Unplanned re-hospitalizations cost Medicare $17.4

billion in 2004 alone. Lack of education during discharge planning and Lack of education during discharge planning and

subsequent physician office visits were implicated as subsequent physician office visits were implicated as causative factors.causative factors.

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,

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

Huge Unmet NeedsHuge Unmet NeedsHuge Unmet NeedsHuge Unmet NeedsA new diagnosis can have deep and long-lasting effects Care & support are of utmost importance to coping. Identification of educational needs is important.

Emotional, social, and physical limitations were identified as most important.

Formal information and support services are needed. Major themes:

Communication of the diagnosis to them Information Needs Uncoordinated services after their diagnosis Reaction to the diagnosis & Formal support Time before diagnosis…Family/careers…Future…Physical disabilities

Little is known about how “recommended practices” influence patients' experience.

Importance of a multi-disciplinary, coordinated approach.

A new diagnosis can have deep and long-lasting effects Care & support are of utmost importance to coping. Identification of educational needs is important.

Emotional, social, and physical limitations were identified as most important.

Formal information and support services are needed. Major themes:

Communication of the diagnosis to them Information Needs Uncoordinated services after their diagnosis Reaction to the diagnosis & Formal support Time before diagnosis…Family/careers…Future…Physical disabilities

Little is known about how “recommended practices” influence patients' experience.

Importance of a multi-disciplinary, coordinated approach. 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

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

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

Studies have increased dramaticallyGap between the conceptual definition of HL and its

application.Three levels: functional, communicative and critical.

Further research is needed to develop measures of HL, including those measuring the interaction of the patient HL with the health and social contexts in which the patient lives.

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

Studies have increased dramaticallyGap between the conceptual definition of HL and its

application.Three levels: functional, communicative and critical.

Further research is needed to develop measures of HL, including those measuring the interaction of the patient HL with the health and social contexts in which the patient lives.

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


Information Technology (IT)Advances knowledge & skills for health care professionals

Studies show only basic computer skills are neededEfforts still needed to enhance computer skills & awareness.

Attitudes of health care professional to thedevelopment of IT in practice matters!

Need for flexibility and usabilityAppropriate education and trainingNeed for the software to be 'fit for purpose‘

Emphasizes the need to carefully plan the introduction of IT-based systems into work practices.

Information Technology (IT)Advances knowledge & skills for health care professionals

Studies show only basic computer skills are neededEfforts still needed to enhance computer skills & awareness.

Attitudes of health care professional to thedevelopment of IT in practice matters!

Need for flexibility and usabilityAppropriate education and trainingNeed for the software to be 'fit for purpose‘

Emphasizes the need to carefully plan the introduction of IT-based systems 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

Health Care Literacy From & For AllHealth Care Literacy From & For AllHealth Care Literacy From & For AllHealth Care Literacy From & For AllInternet & other virtual mediaInternet & other virtual mediaCritical factors in optimizing cancer communication for

diverse audiences literacy, cultural, and linguistic issues

Significant unmet needs low-literate, multicultural and non-English-speaking populations

Emphasizes the importance of understanding the strengths and weaknesses of online cancer communication for vulnerable groups guide patients to better Websites supplement that information with oral and tailored communication.

Development & Introduction of Technologies Requires the acquisition and use of a complex set of skills

Ability to access & understand the technologyAbility to locate and critically evaluate relevant materialBenefits of health sciences librarians

Internet & other virtual mediaInternet & other virtual mediaCritical factors in optimizing cancer communication for

diverse audiences literacy, cultural, and linguistic issues

Significant unmet needs low-literate, multicultural and non-English-speaking populations

Emphasizes the importance of understanding the strengths and weaknesses of online cancer communication for vulnerable groups guide patients to better Websites supplement that information with oral and tailored communication.

Development & Introduction of Technologies Requires the acquisition and use of a complex set of skills

Ability to access & understand the technologyAbility to locate and critically evaluate relevant materialBenefits 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

Health Care Literacy From & For AllHealth Care Literacy From & For AllHealth Care Literacy From & For AllHealth Care Literacy From & For AllHealth Care Professionals need trusted resources

Both for themselves and to give to patients.

Trainees need to be competent in health care literacy. Benefit themselves and those they serve Residents, nurses, pharmacists, etc.

Example: ACGME Core Competencies Patient Care Medical Knowledge Practice-based Learning and Improvement

appraise and assimilate scientific evidence improve patient care based on life-long learning

Interpersonal and Communication Skillseffective exchange of information and collaboration with patients, their

families, and health professionals Professionalism Systems-based Practice

responsiveness to the system of health care, as well as the ability to call effectively on other resources and optimize inter-professional teams

Health Care Professionals need trusted resources Both for themselves and to give to patients.

Trainees need to be competent in health care literacy. Benefit themselves and those they serve Residents, nurses, pharmacists, etc.

Example: ACGME Core Competencies Patient Care Medical Knowledge Practice-based Learning and Improvement

appraise and assimilate scientific evidence improve patient care based on life-long learning

Interpersonal and Communication Skillseffective exchange of information and collaboration with patients, their

families, and health professionals Professionalism Systems-based Practice

responsiveness to the system of health care, as well as the ability to call effectively on other resources and optimize inter-professional teams

1. Patient-doctor communication. Teutsch C. Med Clin North Am 2003; 2. ww.acgme.org/outcome/comp/GeneralCompetenciesStandards21307.pdf


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

information they receive is critical.Targeted, practical cancer information should be provided

directly to caregiversHealth interactions between caregivers and patients should

be improvedModern healthcare demands a high level of health literacy to

successfully manage diseaseOlder adults may be at a distinct disadvantage

physiological, cognitive, psychological & communicative factors.

New strategies are needed to compensate for these lossescreating a health care environment of shared meaning

and understanding tailored to the aging patient.

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

information they receive is critical.Targeted, practical cancer information should be provided

directly to caregiversHealth interactions between caregivers and patients should

be improvedModern healthcare demands a high level of health literacy to

successfully manage diseaseOlder adults may be at a distinct disadvantage

physiological, cognitive, psychological & communicative factors.

New strategies are needed to compensate for these lossescreating a health care environment of shared meaning

and 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 skills

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

All surveyed groups rated as most importantPersonality characteristicsSkills

Understanding of the health sciencesEducationResearchTechnical skills

Continuing professional development is required.Emphasis on teaching skills, outreach work, marketing and

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

Health Sciences LibrarianHealth Sciences LibrarianIdentifying & optimizing skills

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

All surveyed groups rated as most importantPersonality characteristicsSkills

Understanding of the health sciencesEducationResearchTechnical skills

Continuing professional development is required.Emphasis on teaching skills, outreach work, marketing and

promotion, research skills and methods, subject 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 care

professionals.(AND SO MUCH MORE)Research is needed to demonstrate that this

improves clinicians' information skills or patient care.Selecting appropriate measures to evaluate the impact of

trainingDemonstrating validity and reliabilityProviding guidance to health librarians & health care system

Health Science LibrariansHealth Science LibrariansProvide information literacy training to health care

professionals.(AND SO MUCH MORE)Research is needed to demonstrate that this

improves clinicians' information skills or patient care.Selecting appropriate measures to evaluate the impact of

trainingDemonstrating validity and reliabilityProviding guidance to health librarians & health 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/

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

Academic Examples of Health Literacy ProgramsUniversity of Wisconsin, Madison’s Comprehensive

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

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

There research has demonstrated an increased quality of life in groups of cancer patients

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

Dartmouth-Hitchkock Medical Center’s Shared Decision Making Center

http://www.dhmc.org

Many others........

Academic Examples of Health Literacy ProgramsUniversity of Wisconsin, Madison’s Comprehensive

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

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

There research has demonstrated an increased quality of life in groups of cancer patients

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

Dartmouth-Hitchkock Medical Center’s Shared Decision Making Center

http://www.dhmc.org

Many others........

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 Ferree

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

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

Pilot dataFocused groups, surveys

Create & Promote Connections Implement ProgramsMeasure Effects ScientificallyRefinement

Advisory committees, research resultsEstablish “Best Practice” ModelFunding

Identification of NeedsPatient, caregiver, trainees, health care

professionals, librarians, hospital, library, etcPilot data

Focused groups, surveysCreate & Promote Connections Implement ProgramsMeasure Effects ScientificallyRefinement

Advisory committees, research resultsEstablish “Best Practice” ModelFunding


Needs & Goals of UFNeeds & Goals of UF Create unique learning partnershipsCreate unique learning partnerships

Preston A. Wells, Jr. Center for Brain Tumor Therapy & UF Health Sciences Library (and others!)

Promote proactive inquiry & self-directed learning “Information Prescription”

Comprehensive, High-quality, Up-to-date “Clinical Informationalist” (Health Information Engineer)

Point-of-need, help for diverse needs “Immersed” Librarian (Sewell Foundation Grant)

Virtual, Transferable Mobile unit of information for patients, caregivers, staff, trainees “Informed Cancer Patients” Website & novel educational materials

Needs & Goals of UFNeeds & Goals of UF Create unique learning partnershipsCreate unique learning partnerships

Preston A. Wells, Jr. Center for Brain Tumor Therapy & UF Health Sciences Library (and others!)

Promote proactive inquiry & self-directed learning “Information Prescription”

Comprehensive, High-quality, Up-to-date “Clinical Informationalist” (Health Information Engineer)

Point-of-need, help for diverse needs “Immersed” Librarian (Sewell Foundation Grant)

Virtual, Transferable Mobile unit of information for patients, caregivers, staff, trainees “Informed Cancer Patients” Website & novel educational materials

Information PrescriptionInformation PrescriptionCircle oneCircle one:: a patient:___ Caregiver/Family member:___ Interested person:___ a patient:___ Caregiver/Family member:___ Interested person:___Description of information request:Description of information request: Disease: ______________________Disease: ______________________I’d like information about:I’d like information about: * Risk factors * diagnosis * staging * treatment at diagnosis * recurrence * Risk factors * diagnosis * staging * treatment at diagnosis * recurrence

*Specific medicines or treatments **Specific medicines or treatments * monitoring * prognosismonitoring * prognosis * * other___________other___________

Patient or caregiver questions about:Patient or caregiver questions about:* Talking to relatives or health care provider * Talking to relatives or health care provider *Memory and personality *Changes in self-perception or how others perceive you*Memory and personality *Changes in self-perception or how others perceive you* Emotional wellbeing, coping * Energy/Fatigue * Nutrition *Other* Emotional wellbeing, coping * Energy/Fatigue * Nutrition *OtherPatients, please let us know if:________________________________Patients, please let us know if:________________________________I would like assistance and/or education with:I would like assistance and/or education with:* Finding health information, example, how to look for clinical trials * other______* Finding health information, example, how to look for clinical trials * other______* Community, state or national resources (please describe): * Community, state or national resources (please describe): * Shands-UF resources (please describe) * Shands-UF resources (please describe) I would like to be contacted in the future for: ___________________I would like to be contacted in the future for: ___________________I would like to see the following resources and/or services available:I would like to see the following resources and/or services available:

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 Professions College of Public Health & Health Professions Department of Behavioral Science and Community Health Journalism & Communication Preston A. Wells, Jr. Center for Brain Tumor Therapy Department of Neurological Surgery UF Shands Cancer Center & Education & Resource Center Health Science Libraries Volunteer patient or caregiver Resident or other trainee Social worker Department of Pharmacy Nursing Services, etc.

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


Potential outcomesimproved sharing of information between patient,

caregiver and medical providersincreased legitimization of the impact of effective

consumer health literacy programsresource justification for an immersed librarianeconomic impact and resource utilization analysesimproved satisfaction and quality for all involvedimproved healthcare outcomesnew models of interdisciplinary collaborationnovel use of the librarian in quality assurance,

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

Potential outcomesimproved sharing of information between patient,

caregiver and medical providersincreased legitimization of the impact of effective

consumer health literacy programsresource justification for an immersed librarianeconomic impact and resource utilization analysesimproved satisfaction and quality for all involvedimproved healthcare outcomesnew models of interdisciplinary collaborationnovel use of the librarian in quality assurance,

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

Creating & Expanding Connections Developing Services Scientifically Measuring Effects Getting the word out Committees & Advisory Groups Preparations for hospital & extramural

grants

Creating & Expanding Connections Developing Services Scientifically Measuring Effects Getting the word out Committees & Advisory Groups Preparations for hospital & extramural

grants

Current & Future

Discussion & QuestionsDiscussion & QuestionsDiscussion & QuestionsDiscussion & QuestionsHow librarians can collaborate with patients & How librarians can collaborate with patients &

health care professionals in YOUR area:health care professionals in YOUR area:Hospital Websites & Education ProgramPatient & Staff Satisfaction SurveysEducation & Support GroupsCreating Connections

Nurses, administrators, providers, social workers, clergy, counselors, training programs, community vendors, advocacy groups…..

Pick a pilot projectHave Fun!

How librarians can collaborate with patients & How librarians can collaborate with patients & health care professionals in YOUR area:health care professionals in YOUR area:

Hospital Websites & Education ProgramPatient & Staff Satisfaction SurveysEducation & Support GroupsCreating Connections

Nurses, administrators, providers, social workers, clergy, counselors, training programs, community vendors, advocacy groups…..

Pick a pilot projectHave Fun!

♦ & Build on each other’s Successes

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

Erin M. Dunbar, MDErin M. Dunbar, MD

352-273-9000352-273-9000

[email protected]@neurosurgery.ufl.edu

FHSLA 2009 Creating Connections Annual Meeting Erin M. Dunbar, MD

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